Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new 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, there are other threads on this topic - this one is for cancer patients ourselves.

Hello me again, thank you so much for your kind words, they really do help.

I'm sorry for all of you that are going through such a shit time.

I have a little update. I called, and then was directed to email Endocrinology. I have had an email saying that they do not give appointments under the 2 week pathway - which I am shocked by, but I've been given an appointment for 21/10. 4 and a bit weeks away. It feels so long away, especially as this has essentially been going on since early March.

@Queenie8 Totally understand fear at delay. I was told in May rectal lesion found was pre or early stage but this couldn't be determined until removal. I am only getting surgery next week. Statistically the size indicates cancer so I understand the worry. Work somewhat distracted me (until isolation) but I used anything else housework Netflix to keep my mind busy. Not easy to do but no point meeting trouble halfway. Let the fucker wait. Hope you get appt soon.

@BitOfFun thinking of you. ❤️

@InOtterNews. Sending big good luck for tomorrow. ☘️

Got an automated email today with my chemo appointment. Seems that they don’t really go in for personal contact in these parts. I did also get a phone call, but it was half an hour after the emails came through so not really that, uh, useful.

So anyway my first of four cycles of chemo begins on Friday. Thanks health care team, you’ve all been...

That said, I had to go to the hospital today for a blood test and to pick up chemo tablets from the pharmacy. The pharmacist and the phlebotomist were both lovely, really friendly and caring and concerned. It’s amazing what a difference it can make to have someone speak kindly to you.
DS who’s 10 was in floods tonight about his homework, which is due Wednesday and tomorrow is an inset day ie there’s plenty of time. It doesn’t take a child psychologist to see that he’s really struggling to see me so stressed and upset. In turn this makes me even more angry at the doctors for this whole sorry mess. It didn’t have to be this way. And I still have to finish the sodding letter of complaint to the GP on top of everything else I need to do before Friday.

I know I can do this, but it’s not easy. I feel terribly abandoned by the medical staff. I don’t even have a case manager. I just don’t understand any of it.

Hang in there everyone 💐

@LucyWarlowsRightHand I'm
Certainly no expert as I can't even get myself sorted but in my opinion the only thing you HAVE to do is prioritise yourself not the complaint. I've had appointment letters arrive the day or two after I've attended the actual appointment. Sign of the times I guess. Go easy on yourself and concentrate on the next step not the one before. Kids will pick up your stress very easily. I know mine does despite all my best efforts of shielding her from my worries. Wishing you all the best for treatment. Take care of yourself.

Ok I'm for bed to seek that rare commodity called sleep. 😝 I've stalked this thread enough tonight.

Thinking of you all tonight. 🌹

@LucyWarlowsRightHand I didn't mean to downgrade what you've been through so I apologise if my post sounded flippant. I hope that for you, moving forward is not as difficult, with less health service muck ups and you are able to concentrate on your recovery . Lots of love and best wishes. Xxx

Hello to everyone.

Hoping tomorrow goes as well as it can @InOtterNews. Postcard offer still there!

@LucyWarlowsRightHand I totally agree with gillmoregirl, complaints can wait for a few weeks or so. You've had so much to get your head round. Do you start the capecitabine on the same day as the infusion? I'm not up to speed with different treatment regimes. If so, then why not just semi-hibernate with the DCs for the next few days. When I came home from hospital DD (just turned 11) was the one who really felt everything, and we spent ages browsing the playmobil website and ebay (for yet more playmobil...... our house is fast approaching PlaymobilLand) which was suprisingly therapeutic, if expensive for me!

@Lizdeflores - any date yet? Have you seen the stoma nurse? Hoping things move on for you soon.

@gillmoregirl - good luck with your surgery too.

I can't remember who was talking about chasing appointments, maybe @Bloodybridget?? You can get your GP to do it too, you know, if you're not getting anywhere. I'm a GP and our secretaries spend much of their time chasing hospital appointments / times etc, especially now with Covid causing so many delays.....

Love to everyone else. I only have 2 days left of this round of chemo - hurray! Doesn't make a huge difference to how I feel, but I get an extra 20 minutes in bed in the morning as I don't have to bolt down breakfast early to take it on a full stomach!

@gillmoregirl I know what you mean about looking forward not back, but I absolutely must write to the GP. I need a new one and it just all feels so hopeless. I’ve stopped taking my asthma meds, I’m hardly eating, I can’t sleep. I’ve been sent a letter for the flu vaccine and I’m thinking surely I should have it either before or after the first cycle, not right in the middle? They’re convinced (I know from requesting my notes) that I’m unhappy because I have social anxiety. I’m upset because of the total and utter breakdown in communication. They don’t talk to each other within the practice and they don’t talk to me. I’ve had no follow-up from the hospital after my operation. There’s nobody in charge. Nobody actually knows what’s going on except for me (and I don’t know). I can’t stop crying at night, I just feel so frustrated.
The children always know what’s going on because we’ve been totally honest with them. I’ve always said things like “I’m upset because” or “I’m feeling a little bit nervous because”. I reassure them but I also don’t hide anything because it’s my belief that they pick up on that anyway.

I didn’t think your response sounded flippant at all I took your point as being along the lines of: the only thing that matters is you. I just don’t feel I can move forward with this oncologist and GP until they understand that they’re completely wrong and this mess is of their own making. The GPs have fucked up three times... and in the notes it’s clear that they don’t (all) know it. It’s infuriating to be dismissed like that, when I’m the one who was emailed with her biopsy results, not him. The idea that I’m only upset because of an anxiety diagnosis is just infuriating!

@lucywarlowsrighthand hang in there! Kids do pick up on stress. I work in SEN. My own kids, one is being utterly loving - which is lovely, and the other is being a stressy hormonal mess. I'm 99% sure they're picking up on my anxiety, and they have no idea what is going on, or due to come.

Be kind to yourself, and breathe. Could you put a complaint in through PALS?

I feel like I've slipped through the net. But my lovely Mum, suggested contacting my GP for support, advice and help. She was diagnosed with breast cancer 2 years ago and was advised to use the GP to help etc.

Tomorrow is another day.....

I don’t know if that makes any sense... I must complain immediately because I cannot get decent care until I do. There have been so many fuckups that they think (logically) that it’s all down to me, not 2x hospitals and 3x GPs. I don’t have any info about the chemotherapy at all, only what I’ve researched myself. No support, no nothing. I had an operation, got one phone call, got an email with my staging, got 2x headfuck phone calls from oncologist and GP, and now an email saying to show up for chemotherapy. It just can’t be right. I’m worth more than this.

Cross-posted @Queenie8.

Unfortunately my GP has been a huge part of the problem this past week.

I’m not in the UK, and the first stage of complaints here is to sort it out with the practice. They don’t listen to me (which is most of the problem) so I need to have everything in writing from now on. I feel like I’m on trial!
But yes the sun will come up again tomorrow x

@LucyWarlowsRightHand keep fighting. Each day is a new day, and a new battle sadly. Can you get someone else to advocate for you?

@gillmoregirl thank you so much for the kind words. I am currently blitzing the house, training the four DC two mine, two step, to tidy much more after themselves. If the house is tidy, it's much easier for me to clean. I'm also back to work at school after shielding for 6 months, the days are flying by. (do you think I can sleep 4 weeks away? 4 hours a night would be a miracle currently! Bastard arthritis!)

Thinking of you today Otter

Otter and everyone you're in my thoughts today

@LucyWarlowsRightHand. Completely understandable given the way you have been treated. At this time you should feel supported by your health care team which you dont appear to have been. I agree it's best for you document the trajectory in writing as it's quite stark reading from your post and then as @Queenie8 advises see if someone could advocate on your behalf. Are you able to access another practice/gp? My heart goes out to you as I can only imagine the stress this is putting you under and I really do hope that you get some resolution soon so you can concentrate on your treatment. 🤞

Hi no surgery date yet, let's see what today's post brings.The surgeon did imply that it might be more complex to sort because the had to liaise with colorectal surgeon's and apparently there are 5 people already waiting for surgery. I will chase if I'm waiting any longer though.
The stoma nurses were very quick and efficient in offering me an appt they must of acted as soon as they got the e mail from the surgeon. The nurse I spoke to was very pleasant and friendly so I meet with them on Friday in a positive frame of mind.
My house is slowly disappearing under a sea of Lego so I get the play mobil thing! On Saturday my son spent from 11am until 6pm building his latest set. He wouldn't stop for food or drinks and wasn't even distracted by screen time. Lately he has wanted to buy the more complex and expensive kits so he has started doing some hoovering round the house which we pay him for and then he saves his money.
I think kid's do pick up on stress and upset and I always try to be as honest with him as I can. It's a godsend that they are back at school (long may it last) as it gives him time with kids and allows me some falling apart time . Mainly he doesn't want to talk about cancer every now and then he will throw something in that will floor me ,like 'will I have anyone to love me when I'm a grown up? ' In the time it takes me to compose myself to answer he is usually on to another topic. I feel a lot of guilt because there's lots of things I can't do with him but I'm trying to think of things I can do that will be good mum\son stuff .DH is away tonight so we're having a cheeky mid week pizza together!
Love to everyone and I hope the day brings peace xx

Thanks @gillmoregirl :) Well the sun came up and it's a beautiful day. I'm busy making up a calendar so the children can easily see which days I have tablets/IV/nothing, to hopefully make the process more clear for them and for me.

My ex-husband, father of my kids, has been amazing through all of this and has made so many phone calls on my behalf and listened to me ranting about the same thing over and over in a loop. I've also been so lucky with all the lovely friends and acquaintances who've been so supportive. One school mum took me out for coffee yesterday (outdoors and socially distanced of course) and listened to me droning on. She also jumped in to look after DD overnight at short notice when I had my operation. I need to focus on all the good people and less on the couple of them who've made my life more difficult this past week or two. I'll write my letter of complaint and make like Elsa for the time being.

The world's still turning and I'm thinking today of those of you who are facing really tough times right now. Thank you thank you for being here for me, and I hope that I can do the same for you in my calmer moments

Cross-posted @Lizdeflores. I'm glad the stoma nurses have been quick and efficient. I posted upthread that I didn't need a stoma in the end but that the stoma nurse I saw was an example to all of us about how to do your work to the highest possible level. Hope yours is the same. If we had world leaders like her there'd be peace on earth.

An example of overzealous Covid precautions that amused me quite a bit at the time: they initially had me booked with the stoma nurse for a telephone appointment. I was intrigued as to how they planned to mark me up for a stoma over the phone . At the last minute someone realised and I got called in urgently to have the appointment in person.

DD sees a physiotherapist and psychologist due to an anxiety disorder (inherited from yours truly) and they have both been very clear that being honest with your children is 100% the right thing to do. You can't hide it from them. It's better that they feel able to talk to you about their concerns - however heartbreaking their questions might be, as with your son - than that they have the same thoughts but don't feel able to share them.

I don't know whether I mentioned this earlier but once DS felt reassured about the operation and that I would be 'asleep' while having it and wouldn't feel anything, his most pressing question was: "What do they do with the piece of bowel they cut out?" I love kids.

@LucyWarlowsRightHand Great idea about calendar. Your seem to be blessed with good support network.

@Bloodybridget Any reply to your email about surgery yet? Sending you wee pic of horse and also of where I fell. Those nettles were fierce. Lol

👋 to everyone else. Xxx

Just popping in v excited to say have had call from Barts, op next Monday, pre-op this Friday! Phew!

I can see there is lots of news and I will try to catch up soon. Thanks for pics @gillmoregirl!

Wonderful news @Bloodybridget!

So jealous of your beautiful horse @gillmoregirl! Less so of the nettles.

@Queenie8 - sorry, I kind of missed your posts. I agree with your mum. Round here it's ENT that would see a 2ww thyroid referral, so maybe the fact that it's endocrine and not a 2WW appointment is a good thing? Certainly all suspected cancer should go via the 2WW system. Always worth asking. But I agree with all the others that it's the waiting that's the hardest. Look after yourself, and let us know how things go.

@starmer thank you. I have emailed my GP last night, and had a phone call from the surgery (helpfully as I walked into class this morning 🙈), the duty Dr will call this afternoon.

@Bloodybridget

I think as I've had all the tests ENT would do and it is definitely a thyroid nodule that it has to be Endocrinology that I see. Over five weeks from the results to the appointment just feels like a long time. Especially as they suspect cancer.

@Bloodybridget even as a newbie to this thread, I know getting a date is good news 😊.

Another small update. My GP has called. He said the same as @starmer, that my referral should be ENT and most definitely within the 2ww. GP is contacting the Rheumatoid consultant / team to query the referral to Endocrinology, as they will only deal with thyroid problems, it's the ENT medical multiple discipline team who need to review me.

I still feel in limbo, but I have my GP hurrying things along. Fingers crossed for a referral to ENT and seen within two weeks, whether that will be two weeks from the new referral or original I will have to wait for them to contact me. Let's hope the latter as my Rheumatoid consultant is very slow! But 8 days post results I think I'm expecting too much. Who knows.....

@Queenie8

Very good to have a helpful GP. That's more than half the battle. Memo to whoever replaces Gavin Williamson: we need a joined up health service. It's when more than one dept is involved that things go wrong. And primary care should be on the same IT system as secondary. Then I could have got a covid-free blood test, by appointment, in the GP hub, instead of taking my chances at the hospital, sitting cheek by jowl with a whole lot of sick people for an hour and a half after having been refused chemo priority because 'too many people are waiting'.

@Bloodybridget Hooray for a date! I suppose one thing about delays is you're so pleased to getting it done at last that you don't have so much head-space to worry about the actual event.

Salutations. I have arisen! All hail the second coming of Otter!

Well actually, I'm lying down again cos I'm bloody knackered and a bit spaced out 🥴 I'm feeling the effects of chemo on top of the anxiety.

The big part (8 bags of cells) of transplant was completed today over 3 hours. I'll have 4 more tomorrow morning.

Other than cool liquid nitrogen scenes and a sous vide (just like masterchef) it's all very uneventful. I mean, obviously, it's massive but really just dead fancy blood transfusion. (God, I love science)

Then the fun begins and I will really be like a newborn (sleeping and shitting). Watch and waiting for the grafting takes around 7-10 days. This is the hard part where I'll be vulnerable to infection. (I've got an air con vent above my bed - do you think they would mind if I covered it).

@Bloodybridget yes! Dates are good.

All of you - one day at a time x