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.

@Iamsodonewith2020

Sorry you're not doing too well did you get referred to gynae? Did you get your ultrasound scan? Maybe you have endometriosis I'm currently being investigated (gynae/gastro) Iv got terrible symptoms, since June abdominal pain bloating nausea no appetite ect Iv got endoscopy on Saturday.

@Bloodybridget new consultant on the 3rd and I should know from there. It's been a complete nightmare from the beginning and I lodged a complaint. Now I have a new consultant! Never met him or spoken with him but heard good things. My complaint resulted in everyone closing ranks and now event the support nurses are being abrupt, when they weren't part of the complaint. Anyway, lesson learned there.

@Shrillharridan I spoke to my GP and I'm now on meds. Just waiting for them to kick in. Sorry you're not having much luck with meds. Also, yep the NHS still mails stuff. Who knew? It's nuts. I'm still fascinated that a prescription has to be physically printed out and handed over to the pharmacist. Surely that could be electronic? I love an audiobook and a podcast. I was on bed rest for months and listened to loads.

itonlytakesone I have a gnae referral and abdominal and transvaginal scan referral. Bloods next week which includes CA125. Did you have this blood test with your symptoms? I have had my symptoms for a few months but think pain has really kicked in over past few weeks as I had dental surgery and was on pain killers for months. I finally came off them 5 weeks ago and pain symptoms cranked up big time. Endometriosis would be my best case scenario. Don’t think anxiety is helping with pain or lack of appetite.

Shrillharidan, most prescriptions are electronic now but you have to give permission at GP surgery. Hospitals still use paper though

Hello all, such lovely supportive posts on here. I have been reading and not posted before.
Have been dealing with shock of sudden diagnosis of renal cell cancer which resulted in emergency operation to remove my kidney and also a blood clot.
This all happened so suddenly , was in hospital for 3 weeks and have been home now for just over a month.
Due to my tumour being grade/stage 3 the oncologist said I am high risk of recurring cancer and has recommended a clinical trial. Does anyone have experience of this, just worried about what comes next as I know I have assessments first then infusions

Hello to everyone

@Winditup, I hope you are recovering from the surgery and gradually getting your head round things. I don't know about clinical trials for renal cancer (am going to be in one for bowel, but once my chemo ends), but could the Macmillan nurse / CNS / oncologist give you any further info? I got reams of paperwork about all the pros and cons of the trial.

Sorry to hear about your ankle @TopOfTheCliff. One thing after another, but does that mean your chemo is nearly over at least?

Hugs to @Acinonyx2 and @balkanscot with chemo. My feet have started cracking, despite huge amounts of cream on them, so I am hobbling round which is frustrating. But sounds far better than what you are putting up with, so I won't whinge!

Glad your're feeling better @Bloodybridget.

Have you heard from the hospital yet @FizzyOrange? I hope so.

Supportive thoughts to anyone waiting for results or appointments or plans. @Shrillharridan - is your referral not a 2 week wait one then? They are definitely emailed, and - in England at least - have to be done within 24 hours, so perhaps the fact that it hasn't been is a positive?

@Starmer I phoned the consultant's secretary this afternoon but got the answer phone so left a message. It is getting ridiculous now. I have been feeling really rubbish anyway with my raging piles and had to phone the GP this morning to get some stronger pain relief than they prescribed on Monday. All prescriptions get emailed to the local pharmacy but they have had to order it so I'm hoping to collect it tomorrow.

Sending love to everyone xxx

I'm pretty good this week @balkanscot. Had a check-in call with my transplant coordinator today. She's going move my appointment with consultant forward by a week in January to cut my scanxiety down. This is my 100-day post transplant meeting. I'll have a PET scan on 21st Dec. If all goes to plan I could be back at work - at home and part time - by the 2nd week of January. (Pray/touchwood/cross-fingers etc)

The big news is that I'm allowed to see some people - obvs I still have to be careful and avoid anyone with germs etc (so will try make it outside as much as I can). I definitely can't go to the office in London or travel abroad (job related travel) at least until April - until I've had my childhood immunisations in March. But all this is progress and has given me a much needed fillip.

There will definitely be days coming up where I focus on the inevitable recurrence (after all I have the treatable but not curable cancer - wanker). I've decided it's ok to think about it. Acknowledge my bad day(s) and crack on as I have done all the way through.

In other news: 3.5 miles walked today
X

@FizzyOrange - that's so rubbish. You need to know what's happening, even if it's just to be told that they're waiting on something. Could your GP chase for you too? I'm a GP in normal life, and we would definitely be ringing for you now, you don't need the stress of all that waiting.

I love the word scanxiety @InOtterNews! So glad you are managing to walk so far. Feels - to me at least! - like you've come miles since your hospital stay. Hoping the scan and appointment goes well.

@Starmer that's a good suggestion, thank you xxx

@Winditup That sounds like a lot in a short space of time. Glad you're home now. I have suspected renal cell carcinoma and the fb group I'm on have been talking about drug trials. Might be worth speaking to kidney cancer support. I think the have a webpage and the fb support page is good.

Morning.
I had a better night (I took 2 tablets!)
The dr has e mailed me and has re sent the referral via email.
So, hopefully should hear next week.
Love to all x

They have my referral.
Should hear next week

@Shrillharridan that's great news. Hopefully you're finally getting somewhere.

I have just chased my referral and been told by the hospital even though it is a 2 week urgent referral it will still be at least another 4 weeks before I get an appointment.

Michaela

It’s so frustrating how much waiting there is involved. No wonder we are called patients!

@Starmer I had my last IV chemo 2 weeks ago and switch to Herceptin injections for the next 10 months. I am surfacing again from the last one and also the ankle is responding to blockbuster antibiotics I think. I have started back on the exercise bike and recommenced one legged Yoga with Adriene although that’s a bit perilous My BCN says I am pencilled in for surgery some time after the 14th December so it’s worth trying to get fitter before that. Today I cycled a virtual 10k in my living room.

Last night was weird. I couldn’t sleep then when I did I had a night of fragmented nightmares. Each time I woke relieved to find they weren’t real but with a real sense something awful had happened. I calmed down when I did a reality check and reassured myself it was still just Covid and Cancer and broken ankle and infection!! I think my brain was having a massive clear out because today I feel strangely so much better and much less tearful than yesterday. Strangely I trust my unconscious to sort me out and keep me on an even keel. There does seem to be a lot of painful rubbish lurking around in my head. I guess it will need a good clear out at some point. Meanwhile more knitting and radio 2 or 4.
Best wishes to all
Top

@Iamsodonewith2020

Yes the Gp did the ca-125 blood test asap back in June. It came back ok. Hope that you get referred soon I know it's so hard waiting. I'm nervous about my endoscopy tomorrow.

Iv overdone it today Iv had to lie down. Whatever is wrong with me is flooring me after the slightest thing 😢

@TopOfTheCliff what a brilliant way of looking at nightmares the brain clearing out unwanted festering worries.
I have my last chemo next week and then on to the bevacizumab I'm happy to be finishing chemo and apprehensive about the new drug.
To all the people waiting for results and those suffering with side effects I wish you a peaceful weekend x

@seizethecuttlefish thank you I will look for Facebook page. Reading through the thread so many people are waiting a long time for tests and diagnosis. For me it was the opposite I had no symptoms until Frank flood in urine and by that time the tumour had taken over my whole kidney and everything happened so quickly that I'm still in shock and wondering were I go from here. I know I will have to agree to clinical trial as there is no after surgery treatment at moment for RCC but it is all the unknown. How are you doing?

@Starmer thank you, I got a booklet about the trial which I have read but feel at the moment like I'm not taking anything in.

@Winditup, your diagnosis shocked me just reading about it, so I'm not surprised you're a bit bewildered!

@BitOfFun thank you, it is a whole new world and I'm learning about procedures and words I never wanted to know about!

@Winditup the group are great. Very supportive. There are loads of people who are on trials and doing well. They also have a support line and regular zoom coffee mornings.

Unlike you, I have no symptoms and it was picked up when I was getting a scan for something completely different. It's been a bit of a mess from start to finish for me and I'm now waiting on the results of a second biopsy and the MDT to decide what it is and where I go from here. I'll know next week. At least I've had a bit of time to (over)think it. I can't imagine everything just happening so fast.

Everyone says the tiredness is brutal, so I hope you're managing to get some rest? Keep me updated, if that's ok? It's crappy but I'm trying to avoid google and just go with the flow. I'm succeeding and failing in equal measure.

@seizethecuttlefish is the Facebook group called kidney cancer support network?

Do you have any idea what the scan showed up? Definitely the worst part is not knowing and over thinking and of course thinking the worst.

@Shrillharridan pleased you had a better night and hope you hear next week.

@Winditup your diagnosis shocked me too and I do know what you mean about learning about procedures you wish you didn't have to know about, I am the same.

I have finally had my call from the consultant's secretary to say that they have sent my sample off to Charing Cross for a second opinion. Now I feel even more worried and upset plus more waiting.

I think I need to develop a thicker skin with dealing with some nurses and admin staff. I have to have a pint of blood drawn off and have been chasing this all week to try and get it booked in. Finally, a really brusque nurse rang this evening to tell me that she had noted I had 'rung several times this week' and I had to be mindful that they have a backlog of patients and there are 70 people ahead of me, plus I would need to have a blood test and Covid swab before attending, it wasn't as simple as just booking in for the blood drawing. I think she is muddling me with day surgery as I had the same procedure about 6 weeks ago without either but hey ho. Either way, that's me told. I am getting tired of the fight to get anything sorted out - the way she spoke to me, you would think I was being difficult about not getting a slot to have my nails done .

@FizzyOrange I hope you don't have to wait too long for the second opinion. I had my surgery at Charing Cross and found them very professional - not like my local hospital which was a bit of a nightmare. I get what you are saying about having to fight to get anything sorted, if you don't it's like you're forgotten about although I do understand they are very busy.