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.

Speaking of nurse specialists can I ask how you get one. Are they allocated or do you just ring hospital? I would have thought I would have been given the chance to speak to a nurse following diagnosis but was just left to go home after consultant gave me diagnosis. I just wouldn't mind asking some questions now I've had some time to process.

@TopOfTheCliff
That sounds so horrible for you . Just one shit thing after another . Rest and keep the painkillers topped up .

@Fuckmyliferightnow I was diagnosed Oct 5th (grade 3 Her+ HR-) and my first chemo will be Nov 9th. I just got the date today and I was getting very anxious about the wait. I'm doing 6 mo chem then surgery then chemo again as it's grade 3 already in several lymph nodes (so often this is chemo first). I agree the waiting is extremely stressful.

@AlbertCampion What is the breed of your puppy? I have very pampered 2 tabby cats.

@gillmoregirl I was given a card with the specialist nurses numbers (I'm at a very big hospital so it's a team of them). I've called a couple of times because I've been confused about my appts. I thought everyone got a specialist nurse contact - call your hospital and ask - tell them others seem to have one!

@DuckyMcDuck That is very sad indeed about your surgeon.

@TopOfTheCliff Bloody hell! Try and take it easy Top. What a nightmare!

@user675761 I think patience really runs out at about 2 weeks of waiting. I would definitely call someone and at least get a date for an answer.

I forgot the other ladies waiting on scans, tests and possible diagnoses. Once they start with the scans and tests it does rather go on and every little thing is chased - many times it's nothing much but one test does tend to lead to another for a while which is a long trail of anxiety.

@gillmoregirl I met mine the first day I met my haematology consultant. Straight after the session with the Doc, hearing all these technical medical terms, I then spent another hour with my CNS talking in plain language about what it all means.

I know from my chemo sessions (local hospital) that as well as my lymphoma CNS, there's a bowel CNS and a couple breast cancer CNS's that I've got to know as well.

At the hospital where I had my transplant I had another lymphoma CNS and transplant CNS that is my day to day contact at the moment.

@TopOfTheCliff That sounds horrendous! You must be so annoyed and frustrated right now - not to mention the pain. I do think that sometimes bad stuff just seems to pile up. Hopefully you are due a run of good luck!

@Fuckmyliferightnow I would be really stressed by that amount of cancellations and rescheduling. This whole business is stressful enough without that. Is there anyone you can complain to or ask about it?

So the thread puppy (!) is a Bichon Frise called Cobweb. She is nine weeks old and snoring gently beside me now. She is basically a massive ball of fluff and very, very cuddly.

Is it ok if I just sit here and rock. I have to act normal when my lads about and thanks to covid and half term it's been 3 weeks now and I think I might be losing my mind. I'm so tired but can't shut my brain off. I've started 2 courses since this started but can't take anything in or get it from my head to paper.

As for keeping it positive I get to hear about Cobweb a cuddly fluffball sounds perfect and I love the name.

You rock away, my darling, it's bloody hard in the wee small hours! I'm only up because of the intense pain I'm in- I could just cry and not stop. Instead, I'm going to have a contraband cigarette and watch my guilty pleasure GPs Behind Closed Doors.

Bitoffun thank you for replying and I'm sorry to hear about your pain. I must admit I've been craving booze but can't drink it brings on migraines. I've just been online to try and book a Gynaecology appointment only on has appointments in January and at a hospital I can't get to as I don't drive. First is in January so I guess I have time to work it out. Am hoping the results from the bloods will give me a yes or no and dependant on that will push the importance of finding out what all this bits are.
Enjoy your program and I hope the pain eases. I'm afraid I don't know your situation yet I get a bit scared reading but had to post today

What's been going on for you then, nixnjj?

Oh, I meant to mention that you may be eligible for hospital transport- worth looking into?

Good morning to all you lovely women.
@TopOfTheCliff you poor thing, what bad luck to have an accident like that which is also now delaying your chemo. How's the pain now, can you hobble about? Will they wait to put the Picc line back when you do start chemo?
@BitOfFun I'm very sorry to hear that you're having such bad pain. I'm sure we all wish we could wave magic wands for you.
@nixnjj I hope you get some more news soon, waiting for appointments is horrible.
@Fuckmyliferightnow that's rubbish that you've had so many delays and cancellations too. Agree with PPs that you should make as much fuss as possible.
@gillmoregirl like someone above I was introduced to "my" cancer nurse when I had my first appointment at the Royal London immediately after diagnosis (I had surgery there, then chemo at Barts, she works at both hospitals); but I have to say she hasn't been great, I never get through to her first time and she is very slow to return calls. I also have an answerphone number for the whole CNS team and someone does always call back from that, and there's another CNS I've had some dealings with who is much better, so I call her too. They are supposed to be the first point of contact and fountain of all knowledge and assistance, so I hope you can get a name and number and that they turn out to be useful!
@AlbertCampion I hope your appointment today goes OK, of course you will be anxious about it being brought forward. Glad you have Cobweb to adore you and distract you.
@InOtterNews that's a great achievement to climb the stairs and shower on Monday - how's it going now?
@Trumpton I do hope you can get your surgery done on the Island, that would save a whole lot of time and trouble, not to mention being safer Covid-wise.

DP and I are jogging on surprisingly well now, after a few wobbles; we're having some decent walks and seeing friends, which is lovely, having a day out tomorrow when we'll meet her elder DD and son-in-law and very darling 15yo GS for lunch - he is definitely a blessing, well, they all are.

Waving at everyone else here, sending good wishes, handholds, sympathy as needed.

Thanks everyone for advice. I'll call hospital next week when I've house to myself (4th 2 week period of isolating since May. 🥴). Going to take this time to exercise and build myself up before surgery. I'm actually shocked at how little support/info was offered after diagnosis. I'm very grateful for all of you. ❤️❤️❤️.

Pouring here today so I'm planning a Netflix and chill day with DD. Wishing you all a peaceful one. X

I think I'm making good but progress @Bloodybridget - I'm at the hospital at the moment for bloods and it looks like this is the first time for a while that I won't need a transfusion. My transplant CNS just stopped by to say that they're hoping my levels are starting to recover in their own. So despite feeling like I need some red cells I'm just tired. 🙌

Greetings to Cobweb
hello @nixnjj and welcome
Warm wishes to everybody and hoping your treatments are going well and symptoms are controlled
I’m now virtually gaffer taped to the bed by DH after my nasty fracture. I have to elevate my ankle for 2 weeks and not move apart from the minimum. I’m trying to be good.
Yesterday we borrowed a wheelchair and took a plank to elevate my leg and went in to see the surgeon and oncologist.
We agreed that the last chemo will be delayed by a week and if the fracture clinic are happy we go ahead in two weeks. Then my op will be the third week of December in the local private hospital. Radiotherapy planning will be mid January. I’m happy to have a plan and be moving forward.
My role in life at the moment seems to be for my friends to feel relieved that despite living with Covid restrictions they are not as badly off as me!! And my kids are proud of me for rolling with the punches and not being defeated. Happy to be a role model

@Acinonyx2 sorry to hear about your diagnosis. It is very stressful.

I will speak to my nurse on Monday when she gets back, but whilst she's off I haven't been told who else to get in touch with.
I will have a word with her though, I'm so scared this will spread when it could be avoided.

@Fuckmyliferightnow My mammogram screen was rescheduled twice from April so 7 months delay and my sense right now is that the treatment start date is about 2 weeks later than it would be ideally from diagnosis. And as you know only too well - 2 weeks is a long time to sit around imagining your cancerous cells wandering around your body looking for nice places to set up camp. You and I have similar treatment trajectories - we need to keep in mind that we have a targetted therapy coming. I hope you get your dates soon - I feel a lot better I must say now I have some dates. And just try to avoid the news about hospitals under stress.

I rang reception a couple of days ago to check on an appt and she ten referred me to a nurse I'd never spoken to before. Maybe you could ring reception at your breast clinic or whatever and ask if there's someone you could speak to while your nurse is away? I can speak to any of the nurses - in fact I've never spoken to the same one twice.

i actually got some sleep my lad let me slept in which was nice, bit worrying he had noticed. I don't want him to worry unless there's something to worry about. Got his 16th just before Xmas so easy to move conversation and distract him. I've spent the morning trying and failing to get stuff done, just can't settle to anything. Brain feels like a demented hummingbird then turns itself off. I'm sorry I can't focus on individuals but please bare with me as I'm normally a decent person.

@nixnjj - I got as far as googling adrenal adhesions - and then reminded myself that I'm meant to be fading myself out of this thread and others, as @BitOfFun, has superbly demonstrated, are the experts in finding the right words even in the middle of the night. It's one of those tricky conditions with a long drawn-out diagnostic process? Probably OK BUT... and, of course, as soon as they say the word 'cancer', you can't think of anything else? Must be v confusing especially as you were
feeling perfectly OK until the scan for something else. Might be a good idea to ask your GP for help? Mine gave me a mild anti-depressant and valium till it kicked in. It was a life-saver.

@BitOfFun - Psst. Got a light? I was going to suggest 'no point in giving up smoking now' as one of my positives, then remembered where I was.

CNS and 'keyworkers'. In my hospital, I was given one as my keyworker at my first appointment with my surgeon. He was also a MacMillan nurse and put me into touch with their services. He faded into the background when I was transferred to chemo, but was always available if I was having probs with appointments etc. I didn't get a chemo CNS, but there was a 24hr help-line where a brilliant nurse from Guy's sorted me out when I had a funny turn and thought I'd have to call an ambulance - once I'd found some respectable underwear.

@TopOfTheCliff
Oh God! Just the thought of 'reducing the dislocation'! I've watched enough 24 Hours in A&E to know what that's like. Did you get ketamine?

@Acinonyx2 it's torture isn't it. I feel like a number right now and I'm climbing the walls.
So you start chemo in 2 weeks?

Sorry, @nixnjj. I meant 'adrenal lesions', of course.

@Thymeout
Sadly not as my blood pressure climbed too high for their ketamine protocol so I had to make do with IV morphine and gas and air. I suggested biting on a stick like in Master and a Commander but they didn’t approve so I just screamed instead
I’ve got a lovely young CNS who is training on me. She was a bit scared of me at the beginning but she now understands my warped sense of humour. She is great at passing information on from one team to another. And when I need to vent she gets both barrels! I like her.

@Acinonyx2 I think the hospitals are prioritising Cancer care now as they realise they harmed some people at the beginning of the first lockdown. They are round here anyway.

@Fuckmyliferightnow If you are starting chemo it will quickly mop up any stray cells that have gone wandering. That was why my oncologist was happy to crack on without doing bone scans and things. It works on everything especially if you are HER2 positive

I’ve got a problem now I’m dependent on DH for all my food and drink. He gets up late and eats breakfast at around 9.30, snack at 12, lunch at 3.30 snack at 5 supper around 9. It’s doing my head in! But if I moan he might go out for a bike ride. I need a snack box upstairs to keep me going

@TopOfTheCliff Definitely get a snack box. Do you have a bell to ring for service?

@Fuckmyliferightnow A week Monday and counting. One minute I was dreading chemo now I am actually pleased to get started! Sounds like you should be starting within the next 3 weeks - sooner the better of course although in reality a week here or there isn't going to make much difference - it's more of a mental health issue!!

@nixnjj I don't know anything about your condition - perhaps you could give a brief intro?

My 15 year-old is pretty oblivious which is both good and slightly maddening at the same time. She might notice if I actually collapsed screaming - but only if I happened to pull out the plug to her devices on the way down...

I really don't know much about it. Other than the growth causes the adrenal glands to release extra stuff including adrenaline which explains the "Panic Attacks" which I've been suffering with for the past few years. I've suffered depression forever so I was diagnosed with anxiety. I'm trying not to think too far ahead if honest. All I can think of is I might have cancer but hopefully it's just a random bunch of stuff.

On the positive side I've discovered just having people to talk to really helps. I've managed to do some stuff I've been avoiding and brain is less hummingbird and more fighting kittens

@nixnjj If your condition already causes anxiety and an overactive stress response then this will likely make you even more anxious when faced with real threats. Are they treating the anxiety at least? I am trying to work on being more calm - it is difficult. I've never really got on with mindfulness but I should try again. Have you every tried it? I stopped drinking due to some liver issues which is just as well or I'd be lying on the floor with a funnel in my mouth every day.

The district nurses have just been with some injectable opiates, and they've actually worked, hurrah!