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

[LemonDrizzle10]

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I bought these yesterday to cheer myself up. DH wont approve at all but I don't care!! GET THE BOOTS

Mine was a disaster from to finish!

Arrived at 9.15am. Nurse went through everything but then was concerned by my Creatinine level but also big worries about my heart rate and blood pressure.

So, first they said they needed to delay it because my heart rate and blood pressure were too high. Then they sent me for an ECG and said it was ok and so we went ahead, 3.5 hours later. All was well but then about 10ins from the end I started feeling "weird" and really out of it. Was given antihistamine and more steroids plus Lorazepam but then sent to A&E for bloods re possible infection, a chest x-ray and another ECG.

About 11pm they found me a bed in a private room with bathroom on A&E but I am now wide awake with horrible reflux, an alarm going off somewhere every 30 seconds and screams from some poor lady who is obviously having some mental health issues.

@TwigTheWonderKid hope you’re OK. It’s a relief to know you’re still in the hospital being looked after rather than at home. Hope you feel better over the course of today.

@lucysmam definitely buy the boots!

@CoachBeardsJane that’s a long haul. Of course it wouldn’t be weird for you to ask a friend to visit. Real friends want to help but don’t want to intrude and would welcome a specific request, I’m sure.

@lucysmam have you bought the boots yet? 😉

@TwigTheWonderKid sorry you're still there (but glad if there's something that needs seeing to, because you're in the right place however tough it may be)

@CoachBeardsJane I would definitely ask friends. I've been in to visit a friend before. When I'm in hospital, it's much nearer a friend's house than home and so I'm going to ask her. We have young DC and it isn't always possible to find childcare so I'm not sure if DH will visit.

@TwigTheWonderKid I’m so sorry you’ve had such a time of it. As others say, at least in hospital you’re being looked after. Sending lots of positive vibes.

@CoachBeardsJane I would be so pleased to be asked to visit a friend in hospital, I definitely think you should ask!

@TwigTheWonderKid sorry to hear you had a rough day yesterday, are you still in the hospital? If you have to stay in I can thoroughly recommend a Snoozeband to block out all the hospital background noise. I used mine properly for the first time last night and it was great! I remember upthread someone asked for recommendations for a hospital stay but forget who it was. This is my new number one recommendation although my one gripe is the battery doesn’t seem to last that long.

https://www.snoozeband.co.uk/products/bluetooth-sleeping-headphones?variant=40500572848324&currency=GBP&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gad=1&gclid=CjwKCAjw5_GmBhBIEiwA5QSMxIm8Y6TfOk4Ly4hiocgm809nl1vJTw859M20wFz1IqnOolVupuw84hoCj-MQAvD_BwE

@CoachBeardsJane absolutely message your friends and let them know you're up for visitors! I think post COVID people are a bit unsure of the etiquette etc and they will probably be very glad to be asked. Plus days in hospital are long and go much quicker when you've got some company to pass the time.

@Twig crikey! Sorry there were so many hiccups but glad you're being seen to. Hope they figure out what went wrong and how to sort it very quickly.

@Flora glad yours wasn't too bad. I found chemo emotionally draining (in fact I cried during my first infusion). It was definitely the 'shit this is actually happening' moment for me and the first time I felt like a 'cancer patient'.

@lucysmam if you can't buy the boots at a time like this, when can you?!

Ive just had the results of my scans. Im gutted. I knew i could feel those nodes still. Apparently theyve grown in my groin. He said he is going to speak to the other consultant about whether to start radiotherapy or not. I was due to have it when they were shrinking. He said he is putting in a request for immunotherapy on compassionate grounds. This is what he wanted me to have in the first place but without the primary it wasnt allowed. The primary is still nowhere to be found.

I have an uptake on my liver but he doesnt seem over concerned about it.I had it last time as well. Now though he wants an MRI on it.

He said try not to worry and he will see me in three weeks. Easier said than done.

@CoachBeardsJane im so sorry to hear your update. How are you supposed to get your head straight when things like this happen? What region are you in? Maybe some of us are nearby to visit.

@TwigTheWonderKid it’s a rule of hospitals that every ward must have a distressed elderly person shouting Help Me Help Me throughout the night. Ear plugs are best I think. If you get moved there will be another one on the new ward. I’m quite glad I am unlikely to get to 90…. And hope things settle soon.

@lucysmam I think the boots are a good reward for what you have been/are going through. Visualise yourself at a Christmas market in them, or striding up the Champs Elysee. I have just seen a lovely new British built yacht that I could just afford if I cashed in all my savings! Boats/boots its just what we need to keep us motivated.

@EachandEveryone shit shit shit! You knew that was coming didn’t you? And they didn’t take you seriously. Let’s hope the radiation nukes everything. Sending strength.

DH is off to France today. I am following on Friday. Yippee!

Well I did tell him last week, yes. Im hoping things still go ahead whilst hes on holiday! At least radiotherapy will be something until the decision is made about immunotherapy. Has anyone had it here? I think it works well on p16 scc and he wanted it in the first place. I pray it gets the go ahead.

Hi @EachandEveryone sorry to hear your news. Re radiation, yep I had it for primary squamous cell carcinoma of the cervix and involvement of two pelvic lymph nodes.

Happy to answer any questions but it honestly wasn't too bad at all. The worst thing was having to have a full bladder for the treatment.

I'm sorry you're going through this @CoachBeardsJane - I had a wound that opened after radiotherapy, which meant to-ing and fro-ing to the hospital twice a week for six months, and then I needed surgery anyway! Although you're suffering now, hopefully it will be resolved before long and you can get home.

If I was your friend I would be very happy to come and see you - I'm in the Midlands if you're anywhere near?!

Yes o have questions were you p16 positive? Did you have chemo first? Are you alright not as well as you can be? Thanks

@CoachBeardsJane I was thinking about long stays in hospital. Back in my misspent youth I had a spectacular car crash and had two months on traction in the National Orthopaedic hospital. The best things were: a jolly neighbour also on traction to chat to, choosing food from the excellent menu days in advance, visits from friends/DH with more food, a scrapbook some friends made me at a sporting event I was missing. Worst things were: peeing uphill into a bedpan which always spilled, shouting elderly person in distress at night, people praying over me (although the hospital chaplain was lovely to chat to). I think it was bearable because I was recovering from day 1, a “good patient” that pleased the doctors, unlike some poor souls. I had a further six months of non weight bearing afterwards on crutches. I get institutionalised instantly. I always thought I would enjoy prison because of that.
What is the ward like? Are you in oncology or general surgery?
Sending strength
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@EachandEveryone I was p16 positive. I had 25 sessions with lower dose chemo each week followed by brachytherapy which is the standard treatment for stage 3 cervical primary - I know yours is secondary so that may be different.

I am around six weeks out of treatment now and absolutely fine in myself - in fact currently typing this at the gym. I was quite tired for two weeks following treatment but there were a lot of factors involved in that. No other side effects apart from a slight cystitis feeling towards the end of treatment and maybe the odd loose stool movement.

I am waiting for my three month pet scan to see how it all worked, however they did a scan after the 25 radios but before the brachy and at that point there was only a small residual of the cancer left in the lymph nodes (and the cervix tumour was significantly reduced). Given that radiotherapy works for another 3-6 months after it's given I reckon that it would have cleared them even without the brachy if it was only residual at that stage.

Also one of the lymphs involved was swollen to 5cm, the other to 3 ish

I dont know where my primary is but it is p16 positive which is supposed to respond well. Ive never been hpv positive but I dont think they ever tested for it when I was having smears. Ive already had a full hysterectomy so goodness knows. I was initially told ten doses of radio but i guess this will change now. I feel as if nothing happens quick I just hope its all discussed and planned whilst he is away.

Thinking of you @EachandEveryone - and hoping for a plan on next steps soon for you, so you can crack on.

That’s all I want I feel like I’ve had a break now after the chemo and I really need to get on with it before it grows any more. The liver has concerned me I think it’s the thought of the MRI I can’t stand them.

I'm back here for a bit of a bit of support because I've got. nowhere else to go to be fair. Am 90% sure I've got a reoccurrence due to aching lymph nodes and lower back pain

Was stage 2cervical.

One year post treatment scan in three weeks (11 months but NHS and their dates!)

Nothing I can do to change the outcome, we are where are.

Keeping everything crossed for you @JIL2013.

Do you get scanned every three months? Presume the last scan was clear?

@JlL2013 have you got a specialist nurse you could talk to? Even if they can’t speed things up for you they will be helpful in chasing results if they are aware of your concern. It’s hard to stop the doom thinking though when you are worrying.

@ClashCityRocker thank you. Got scanned in Jan which was my first one post treatment. That was all clear and then one at the beginning of Sept which is one year on, ish.

I think it could just be the menopause kicking my butt but I have this sense of impending doom that I cannot shift.

@TopOfTheCliff you are right I guess I should give the cancer nurses a call. Scan is in three weeks ish so probably no point in bribing it forward.

Thanks both x