Cancer support thread #76 - newbies welcome!

[Bloodybridget]

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.

I actually find our NHS inthe community (GP etc) shocking currently. I cannot even imagine Shrillharridan how upsetting and worrying it is to find everything taking so long. I just can’t see the need for all the delays. I have a phone call tommorrow which should have been today but they called at the wrong time and I was still at work. That phone call was requested 2 weeks ago. It’s primarily about medication so I have done my own research inthe past 2 weeks! All our communication is online now so even a simple “are my blood tests back? Y/N ” Requires you to book an appointment up to 3 weeks away. I can’t see why the GP surgeries are empty of staff?? I work in a school and we have all carried on basically as normal throughout the pandemic and since June have ALL been back at work. Sorry rant over. Just struggling today as was hoping to have my results by now and am in considerable pain so am tired. Hugs to all xx

Hi everybody. Sorry I haven't posted for a while but I have been here reading and willing you all on in your various journeys. It must have been scarey not being able to feel the pedals when you were driving Bloodybridget. Some of you have been waiting so long for tests and that is so frustrating. I have been putting my head in the sand and trying to pretend none of this is happening at all and that somehow it's all a mistake that I am having procedures to check whether or not I have cancer.

Tomorrow morning I am going in for a day op under GA to have a polp taken from my womb and to have womb biopsies. If it's cancer I will have a hysterectomy in the new year which will include my ovaries. If it isn't I will have key hole surgery just to remove my ovaries as there is a cyst there as well as the polp and thickened lining in my womb. You can guess which decision I am hoping for. Just want tomorrow over and some answers now. Keep on keeping on lovely people

Thanks all for asking. It's definitely kidney cancer. It's a primary tumour, T1a so best prognosis I could get. Kidney coming out in Jan. I'm very calm. It's as good as it could be. All contained in the kidney, as fas as they can see. Just trying to figure out the logistics of it all and getting childcare etc sorted. My consultant was shocked that no one had told me the results and launched straight into "your kidney is coming out" and had to be told to reverse and actually discuss the biopsy results. Their communication is appalling.

So hoping everyone gets needed answers soon. I have to say that my local GP has been helpful - he's new to me and we've never actually met. I guess there is a lot of variation and I'm lucky.

OTOH hospital communication has been a bit spotty and I do feel I have to keep on top of what needs doing and when.

@shiningstar2 hoping for the better outcome.

@seizethecuttlefish Good to have a proper outcome decision and plan and at least the consultant seems to be on the case.

@Shrillharridan hope things move along more quickly for you.

Thanks Acinonyx2.

siezethecuttlefish. So sorry it's cancer. Good you have a diagnosis and that everything is contained in the kidney and you have a plan for the New Year.

So sorry people are still waiting on results and info. It really is shocking. It's very cruel - waiting for results was the worst bit of my experience with cancer so far.

@seizethecuttlefish I am so sorry about your diagnosis and in awe of how calm and focused you are being.

I had my PICC line fitted today which was a bit of a rigmarole as my veins/arteries weren't being cooperative and it took a few goes. A trainee nurse had to excuse herself from the room as she felt faint, which added to the general discomfort!

First chemo tomorrow. Feeling very scared but also just need to get it done now. Anything I should be aware of, last-minute? Also, I've been told I have to inject myself in the stomach for six days after every session. Dreading this as I find stomach injections v painful - will I be allowed to use numbing cream, and if so can anyone recommend one?

Hi
I posted a bit last year. I finished rads last november and I'm on Letrozole, ibandrionic acid and zoladex injections. I'm finding it a struggle. Didn't realise that hormone therapy would be so difficult.....

@AlbertCampion well done getting the picc sorted. You can use Emla cream for the injections - they might give you some at the hospital or you can just get it from pharmacy. But these are small subcutaneous injections and really not very painful.

I do 5 after each chemo. When I was doing IVF I always injected into my thigh (so many injections I looked like a junkie) but chemo nurse encouraged me to use my stomach and I am converted (fewer injections for the space so works fine). Even my skinny nurse was able to demonstrate pinching a fold of skin along her mid line. Then I inject into the fold (NOT into the flat stomach) holding needle at an angle, usually about an inch or more away from belly button. Then just push it in evenly but commit - the initial little pin prick doesn't get worse. Then push plunger evenly and your done. Even I can do these and I am not good with needles.

Take the med out of the fridge for 20-30 mins as it stings wen it is cold.

First chemo is long day as they take things slowly to see how you respond so take something to distract you (I work on laptop first half, then read, then listen to music) - and snacks. And a bottle of water as it's a pain getting drinks sometimes.

Thank you all for kind comments, I'm so thankful I found this thread ❤️

GP has referred me for an x ray which I have Monday morning.

I feel a lot calmer now I've made it real in a way, and it's not just buffeting about in my head.

I was speaking to a health psychologist colleague recently and she seemed to think cancer is often more of a chronic/long term health condition these days as treatments are so much better, so something people manage and live with kind of like diabetes etc.

It made sense and sounded reassuring anyway

@gib1973 sorry you are finding hormone treatment so hard. How long will you be on this regime?
@MrsPnut your treatment plan sounds complicated, but I guess it's good that the oncologist is thinking about it carefully and adapting to aim for the best outcome, sounds like she's really on top of things. Hope the breast team are as good!
@shiningstar2 hope the surgery goes very well today, and of course that the polyp is not cancerous.
@Iamsodonewith2020 all the bad communication and faffing about with appointments must be exasperating. Honestly if every hospital contacted us promptly when they said they would, and gave appointments in a reasonable time frame, wouldn't it take a lot of the stress away?
@mooseyem so sorry you have this anxiety about possible tonsil cancer. Hope things move fast so you're not left wondering for too long.
@AlbertCampion seconding what Acinonyx said, I think you won't find the injections too bad. The needle is very fine, just take a deep breath and stab it in!
@seizethecuttlefish not the best news, but I'm glad to hear it's been caught so early. Wishing you successful treatment.
@BitOfFun how did you get on yesterday with the MRI? Could your DH or your DM come into the hospital with you?

I keep noticing things in/on my body that I wonder if related to chemo - a very sore place at the back of my mouth , little dry patches of skin on my face and hands, under my left jaw feels like it's bruised (but isn't). And lots of headaches. Nothing serious but just wondering what I have to look forward to over the next five months.

Has anyone got snow?

shining good luck x
seize sorry for your news but great you have a plan now x
Well, no further on.
If I haven't heard by this afternoon I'll phone (again)

On the treatment probably around 10 years. Might take me a while to get caught up with the conversation....
There is a little bit of snow here but it’s not settling

Thanks for all the lovely comments. I'm amazed by everyone going through chemo, radiotherapy, hormone therapy and so much other stuff. Can we get together and run the country? I think we are the right people for it!

I need to lose weight as I got a massive lecture. I've lost 1.5st since finding out but I need to get on top of things if I want my kidney to do the work of 2. My blood pressure is also horrendous and apart from pregnancy, I've never had an issue so I need to sort that too. Luckily I have loads to focus on.

@Shrillharridan the only phrase for your ongoing stuff is...WTAF?!? Sorry but it sounds like you're getting the worst end of it all.

Hugs to all who need it.

cancer is often more of a chronic/long term health condition these days as treatments are so much better, so something people manage and live with kind of like diabetes etc

@JudyGemstone - this is essentially me. My cancer is incurable (other than by bone marrow transplant, which carries risk of death, so is never considered unless all other options have failed)

But it is being held very effectively at bay by a targeted inhibitor. It’s not called remission in the same way as you get with tumour cancers, my body would keep producing the wrong blood cells if left to it’s own devices, but it’s akin to a functional remission as I’ve had a major response and do the number of problem cells so low as to be undetectable other than by an extremely sensitive blood test (even though I’m seen in a major teaching hospital, they have to send off my tests to a different one as not everywhere has the capability to carry them out).

I’m on a 12 week review and prescribe cycle for life now. And if the drugs keep working, I’m looking at a normal/near normal life expectancy.

The pit at my feet is if the leukaemia becomes resistant. So even though I feel ‘normal’ a lot of the time, I still get scanxiety when a review appointment is in the offing

Had my MRI this morning. I did well as I'm claustrophobic. Staff all men and didn't seem really aware that lying so still on my back for so long would make my balance wobbly and me generally light headed afterwards.
And I don't really know what happens next. I'll phone the nurse if I don't hear something soonish just to check how long I should wait to hear.

Wow IVampire that sounds like it must be quite stressful, waiting for the review every 12 weeks. But great that you're in a kind of "remission". Do you have to shield more during Covid - are you classed as clinically vulnerable?

Just done my first chemo. Home and feeling a bit headachey and slightly nauseous - not sure if that is the drugs or just because I slept badly last night! Thanks so much for the injection advice. Have got some Emla cream to see me through it. It's mad - I have four tattoos, have had all sorts of unpleasant procedures for my UC, have obviously now had biopsies and guide wires and operations and a PICC line, but it's the relatively mild stomach injection which is sending me over the edge!

@AlbertCampion I don't even have pierced ears I'm so bad with this stuff. IVF taught me to inject like a pro - but I don't like blood tests and cannulas can really push me to hysteria - hence the port.

@MollyButton MRIs are quite tedious.

Shrillarridan can you actually get through to anyone by phone? We can only request phone calls using an online service. It takes 7-10 days for them to get back to you. I was meant to have an appointment yesterday, which they then changed to today and then they called 45 minutes late so I had gone in to class. On my file it says some of my bloods are NORMAL no action needed and then the CA125 and liver are SATISFACTORY; doctor to call patient to discuss
I should feel better but worried now as google suggests satisfactory means slightly above normal range and needs to be investigated further.

Yes @AlbertCampion - everyone with blood cancer was asked to shield.

The good news is that it’s not a contraindication to the vaccine nor is there any reason to think the vaccine work

Different cancers have different stresses - my treatment has all been very civilised, even the initial chemo was one of the more user friendly ones. And mercifully I have no current side effects to the (daily) med I’m on now - despite the pack info leaflet having a very impressive lists of what can go wrong!

I can ‘forget’ I have a blood cancer most of the time, and sometimes feel like a bit of a fraud on here when others are having the really tough bits of treatments and the aftermath of extensive operations.

Hello everyone,

I'm just surfacing from chemo cycle #6 of 8 and wanted to throw a quick hello into the room!

I have to say, I'm finding the many stories about late appointments, poor communication and not being able to get hold of important info or results just so infuriating and upsetting. I could cry every time one of us experiences that kind of thing. Awaiting a diagnosis or dealing with cancer is insanely hard even without these issues, and it just seems to unfair.

Rant over. I needed to say that.

My update... My bloods are not looking great any more at this point of chemo, especially the liver, so my Paclitaxel dose is down to 75% now. Not ideal. I also still have the cough from hell. It's not Covid and didn't respond to antibiotics, so I've now been given an inhaler. I'm to see if that makes any difference over the weekend. But I do feel that the end is in sight now - just about! Two more cycles and I'm done.

I've also meet the oncologist who's in charge of the radiotherapy. I'm going to have 15 fractions over 3 weeks, starting in mid January or so. So active treatment should be over by February half term.

Love to all of you xxx

PS: we had a tiny bit of snow, and DS (aged 5) was in the garden playing at 7:30 am.

Hello!

Can I ask a question? First chemo today at 9.30. Home and nausea is properly kicking in. I have taken cyclizine but also have dexamethasone which I thought they told me to start taking tomorrow (a dose at ten and a dose at two) but I am wondering if I got that wrong and should have taken it today? Argh. I know asking people on the internet is not the way to go but I just don't want to phone the emergency number on my first night! It's not even an emergency really - just my crap listening skills.

@AlbertCampion I’d take it now unless they gave you an IV steroid today.
@KentishMama sorry your bloods are not good.

I haven’t read back in detail but my GP is amazing, I had no GP input in my referral to the hospital because it came from my smear test but when I needed a referral to a private oncologist he stepped up and did it same day.
They have done shared care for my ulcerative colitis for years so are used to it.

@AlbertCampion - I would ring, sure they won't mind. But, if you don't want to, then yes it'll help the nausea, but it might make it difficult to sleep tonight. Hope you have an ok night. At least you've started - I felt much better in myself when the waiting for chemo was over, and I'd started it.

Sorry you're having a hard time @KentishMama. I started cycle 7 of 8 today, so we can race to the finish! (different chemo, cancer, and regime, I know, but hey .......). Jealous of the snow too, my kids are desperate for it, and we usually get lots up here. They had snow ploughs out near my parents, but just rain here.

@Acinonyx2 I am a complete baby about needles (ironic given my job - I don't mind sticking them into other people), but one upside of chemo is that I am getting much much better. Tablets too - never thought I would be able to neck 11 a day!! Hope the emla works and they're not too painful. DH had to give me all my Clexane ones when I was discharged, and boy didn't he make the most of it. Empathetic he is not!

Love and happy thoughts to everyone else. And thanks too for the GP love on here too. Was feeling a bit down about some of the comments. Most GPs are trying their best, in a creaking system and in the midst of a pandemic......

@AlbertCampion I get IV steroids on the day so I take them next day so not sure. Doubt it will make much difference TBH. But if the nausea isn't controlled (and definitely if you actually throw up) they can give something stronger. I haven't had much nausea but friend's sister had to have stronger nausea meds.

@KentishMama is that a chemo-cough? I've developed this weird cough and I read that can just happen. Also - my taxol was cut already to 80% due to neuropathy but dr said there's a lot of buffer in the taxol dose so hopefully doesn't really make much difference. My feet are certainly happier for it anyway.

@AlbertCampion If you had IV dexa today, then the tablets are probably for tomorrow. Do you have any other anti sickness, eg metoclopramide or Aprepitant/ Emend? They'd probably be good to take tonight to get on top of the sickness. But if in any doubt, call your chemo team as they're quite literally there to help you with this.
Also: I was sickest in my first round, the next few were nowhere near as horrid. So hang in there! You've got this.