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.

@14yearsandcounting oh such good news, you must be so relieved!

Yay @14yearsandcounting that’s fabulous news.

@Lizdeflores eek just as well you didn’t have much else planned!

@FizzyOrange just to confirm the chemo day itself is quite pleasant high in steroids with nice people to chat to. I finally had my last session yesterday and apart from another allergy to docatexel it was fine. Hilarious getting me and my drip stand and the wheelchair and crutches in and out of the toilet though. It took three nurses!
Once home there’s a cozy day or three before the gut side effects build up. Then a week of variable bowels and sore mouth before resolution. I find the filgrastim make me very unwell with pain and fever but it’s bearable with Co-codamol.
I’m feeling so relieved I’ve had the last dose now even with the fortnight of side effects ahead . Time to move on the the next stage in this pentathlon of medical fun!
Good luck to everybody. How’s @gillmoregirl doing?
TopO

@14yearsandcounting. FAN-tastic news! So pleased for you.

@TopOfTheCliff you sound relieved to get the last chemo session out of the way, that is good news. What is the next step for you?

@FizzyOrange I seem to be getting the Kitchen Sink treatment.
I’m carrying on Herceptin for a year, and scheduled for lumpectomy and axillary clearance in December then radiotherapy in January and letrozole for 10 years and zolendronic acid for 3 years. Not sure why I qualify for all this as I only had one lymph node affected but maybe it’s because it’s ER and HER2 positive. Worth going through it for a cure I hope.

Have they actually told you you will have chemo ? Or are you still waiting for the plan? It’s the worst bit everyone says!

@TopOfTheCliff that all sounds very thorough. They have said I will need chemo and surgery and then maybe more chemo if it is that way around. I am still waiting for the biopsy results and a proper plan. The waiting is awful and once I get one wait out of the way, I seem to start another one.

@14yearsandcounting Great news

I've been back in hospital all day - but it seems to be just lingering adverse reaction from Monday combined with reactions to filgrastim - fever, chills, pains but not an infection. I think I have a pretty overactive immune response! But no nausea - haven't taken any nausea meds yet.

I'm doing the zolendronic acid as well - how often do you get that @TopOfTheCliff. I'll also stay on Herceptin after surgery in May.

@Acinonyx2 if you can tolerate it there’s a weekly tablet called Alendronic acid. If not it’s an infusion every 6 months. I’m hoping for the tablet personally.

@TopOfTheCliff always up for a tablet option!

fizzyorange - I mainly got chest and throat infections, with severe "dire rear" thrown into the mix on several occasions. Like I said, I was really unlucky! I think most of it was picked up from my 7 year old bringing it home from school, and me not being able to fight off what would be a low level infection in normal people . I've got well controlled asthma, but have always been susceptible to chest and throat infections and that's what i normally got.

I'd forgotten about filgrastim! Definitely, definitely stock up on cocodamol - get the stronger strength from your GP and take regularly. The filgrastim boosts your immune system by causing your bone marrow to over produce blood cells - the pain can be pretty horrible (regular painkillers really, really help). If you need stronger painkillers ask for them - there's no medals awarded for suffering in silence!

I had 6 rounds of chemo, 3 EC followed by 3 docetaxel, herceptin and perjita. Then I had reduction mammoplasty with axial node excision, then high dose radiation (5 triple doses over 1 week, instead of 15 doses over 3 weeks, due to covid). I'm still on herceptin until end of January.

I hated the feeling of not being in control, but had to accept that I had to relinquish control to the doctors. I tried to think of it as being on a conveyor belt of appointments and treatments, and myself as just along for the ride. I tried really hard not to stress about the loss of control, as I'm normally the organiser and in charge person that people rely on - I won't say that I succeeded all of the time, but it did help!

This forum got me through some very tough times - everyone on here knows what it feels like, and it's a place you can ask questions and rant - no having to keep up with the pretence of being strong and brave on here if you don't want to! I found that really helpful, as in front of my family, particularly my little boy, I had to keep a lot of my fears in check and put on a brave face - at least until he was in bed or at school. Good luck with the first chemo - I remember how terrifying it was to go to the first one, but honestly it was ok. The nurses on the chemo ward are amazing at helping to make you feel ok.

@TopOfTheCliff Congrats on completing chemo! Another hurdle done!

@Acinonyx2 So sorry to hear you have been back in hospital again - you must be exhausted with it all.

@FizzyOrange We're not sure what will be open - his birthday is on 12th December so it's a Saturday. Ideally he wanted a Pizza Hut party but I suspect that is unlikely in the current climate!

It looks like it will all be put back anyway though, as I have just had my CT date - 27th November. Breast Nurse says this is an unusually long wait but the system is just overwhelmed at the moment. So my case won't be discussed again until the MDT mtg on 30th, after which they will make the oncologist appointment. I was originally told I would be starting chemo at the end of November, but no hope of that now. I am really starting to get fed up with this. I first found the lump in August and the timescales just seem to be sooooo long. Another two weeks of agonising just seems so horrible.

@AlbertCampion hope you can get something nice sorted for DS's birthday. What an absolute pain about your CT scan. I am finding that the delays are so prolonged with waiting each time to 'catch' the MDT meetings and it is just awful. Just a thought - when I was referred (by haematology) for a CT scan I was told it would happen in 4/5 weeks but got an appointment the next day due to someone cancelling. Would it be worth you ringing the CT department directly and seeing if they have any cancellations?

@Zorgothslugofdoom sounds like very much the same regime to me. What a pain to get all those infections! I have a teenager in school - just hoping we can get through winter for the first time ever without catching something. Interesting yes the filgrastim is really giving me some pain but I can't tolerate codeine (dr commented that I do seem to be a bit drug-sensitive generally..) - hopefully paracetamol will take the edge off. Was hoping to get through some work today

@AlbertCampion How rubbish about your scan and plan.

Thanks @FizzyOrange. It's a good point - my nurse said she will be trying to catch any cancellations for me, which is really fab of her. So I will keep fingers crossed. Another thing which is had been suggested by a family member is that they would pay for me to have the scan done privately. I'll talk to my nurse about this tomorrow, but does anyone have any experience of this?

Hi all. Sorry I haven't read updates but will post one of my own as you've all been so supportive. Didn't go as planned. Keyhole turned into open surgery as extensive adhesions caused by endometriosis meant that 2 gynae surgeons had to called and total hysterectomy done. Operation took 8 hours to perform. Poor doctors! Everyone's worried about me but I was asleep. Lol.

Stoma also given. Just had tea and one slice of toast. First meal since Tuesday evening. Making funny noises. Due to covid being I this hospital my surgeon wanted me to be in side room due to the extent of my surgery and this ward doesn't have nurses well versed in Stomas. Just hope it holds until the morning.

Leave it to be to be a bloody diva and require all this attention. Lol

Love to you alll. Catch up soon. Xx

Sounds difficult @gillmoregirl you deserve all the care that is given to you x

Oh @gillmoregirl that sounds horrendous. So sorry. Hope you and the atoms are holding up ok. x

Stoma! Bloody autocorrect.

@gillmoregirl Hope you're not in pain and manage to sleep through much of the next few days. It's a great healer.

@FizzyOrange I just wanted to say that everything you are asking/feeling is completely normal. I'm a planner/organiser for my day job and not being in control has been one of my biggest issues through all of this. You're strapped in on the crappy rollercoaster now, so you can't get off. Once you know your treatment plan and get the first one out of the way - you'll feel less anxious (a little anyway).

I had two types of chemo on a 3 week cycle - first one as a day patient (all day), the other as an inpatient (5-7 days). Plus a bonus two week stay with infection.

No real news from me (which is good) - I've felt a bit ropey the last few days with pain in my lungs so have been at the hospital getting checked over for chest infections etc. No sign of infection and bloods are good. Have got my 6 week discharge meeting with the Doc next week - doesn't time fly!

Big hugs to everyone x

@AlbertCampion In terms of getting a CT scan done privately I think I would ring my local Nuffield/Spire hospital and see what they require in terms of a referral. This way you won't be fobbed off by someone at your existing hospital saying 'you don't need so and so' to then find you do so you have maximum chance of it being as fast as possible.

@gillmoregirl oh my word 8 hours! Hope you are feeling ok xxx

@InOtterNews thank you for your reassurance. I am really impatient by nature and feel wildly out of control with it all. What is the 6 week discharge meeting for? Hope it goes well for you.

Hello, long time no speak! Just wanted to pop up again and confirm I'm still around. Hope everyone is holding in there. Bone scan tomorrow to see if it's spread...fingers crossed for not.

@gillmoregirl Well done you - that's a lot of typing for someone who's just had 8 hrs surgery. Hoping at least you'll be able to get some sleep in your splendid isolation.

@FizzyOrange I had a stem cell transplant in September x

Hello all!
Firstly@gillmoregirl, gosh that's a bit of a shock for you, such a long operation and much bigger surgery than you'd expected. I hope you and the stoma got through the night OK, and that there are stoma-trained nurses available to you from now on. How are you feeling today?
@14yearsandcounting that is terrific news, I am so pleased for you!
@Acinonyx2 I'm sorry that you and your DH are having to cope with money/work worries on top of all the health issues. Did your DH get the scan today?
@Toofaroutallmylife sending calming thoughts to you while you wait for the scans next week.
@Itonlytakesone very tough for you having to wait and wait for a date for investigations. It does seem to be a postcode lottery, which is horribly unfair.
@Lizdeflores I'd love you to come to our next concert! It's the centenary of the choir this year and we were meant to do a big concert in Southwark Cathedral in April . . which was then delayed to July, then to October, and now it's July next year (I think). Hope your surprise chemo went OK today, finishing by Christmas would be ace!
Commiserations to @AlbertCampion and @FizzyOrange re sleeplessness, and also to Albert on the long wait for a scan and consequent delay to chemo - I do hope you get a cancellation. Have you asked the team at your hospital about going private?
@InOtterNews sorry you've had lung pain, how are you feeling now? Is it really that long since you were discharged after the transplant?
@Hippiechick162 I do hope the bone scan results are OK. How long before you know?

I'm fine. DP revealed our situation on our street WhatsApp yesterday and we have been inundated with lovely messages and offers of help, our NDN just brought some excellent cake and soup . . feeling very lucky in many ways.

Sending warm wishes to all, hope you all have some good times over the weekend.

@Bloodybridget how the hell can you keep track of all of us! You're an amazing lady and you deserve all the cake.

I'm ok. The pain is whenever I exert myself. That doesn't mean I'm doing an exercise class. I've been trying to go for a walk to build my strength up, so only managing a mile. But there are 2 hills and when I get to the top, I feel like I've smoked 60 cigarettes. Even when I did smoke I never felt like this. Dr just told me to take paracetamol and keep an eye on my temperature.