Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

I'm so sorry about your boss. I had a similar thing with a previous manager. I worked part-time and the NHS clinic was always on a Friday, which was one of my working days. Constant passive aggressive comments about going to medical appointments on working days. Made a stressful and traumatic time so much worse. Hope you can get it sorted soon.

Morning
@HumphreysCorner I hope you are recovering well and DD2’s birthday went well yesterday.

@JeanLannes I hope things are turning a corner for you, sending you strength.
@JeanneFrench I hope your treatment is going ok too?

Welcome @Blooter and @kimlo I hope someone can answer your questions.

I’ve had a bit of a shitty weekend, feeling a bit blah and the dreaded diarrhoea has come back with a vengeance. It’s also bloody because my ulcerative colitis is probably playing up too. I’m taking dexamethasone to try to ease it but I shall lounge around today and feel sorry for myself.
I hope everyone else is doing better than I am!

Hi all

I slept most of yesterday, was ok ish on Saturday. Felt sad DD2's birthday wasn't brilliant but she said she'd had a good day. Just feel tired and sore, bit of leakage from the glue but other than they ok. Surgical stockings are not hurting either. Am alone as everyone is at work and school so going to chill and do my arm exercises.

@MrsPnut dreadful diarrhoea, can you take Imodium as it's a life saver?

@kimlo ask away, we are here to listen and help if we can.

@JeanLannes I'm sorry you are having a rough time. I hated when I had 2 chemos delayed but you'll soon have them and they will be done with then surgery.

@Acinonyx2 I'm not seeing my surgeon for 4 weeks which seems ages. I have no dressings so keep looking at my deformed boob. DD1 is convinced it will bounce back to life when healed.

Big wave 👋 and good luck for treatment and results this week.

Waiting for a call from the nurse to tell her how much is in my lovely drain.

HC x

Thank you all. I think one of the problems being a general planner is that I can’t plan anything and I never know how I will be one week to the next. Things settling down on the family front and I have been to see the head and deputy head at school this morning because of ongoing issues there. My patience is wearing thin!

Hopefully tomorrow I can have session 9 - halfway through - and that feels like a landmark.

My latest issue is a sore undercarriage. Nothing to what you have experienced @MrsPnut but I did go through your posts and buy some medihoney which helps. I think a combination of coming of HRT, inflamed skin and generally not healing has all contributed. Diarrhoea is the pits. I hope it settles. I swing from diarrhoea to constipation every week. Imodium has too great an effect on me but did see advertised that there is a children’s diarrhoea product which may be less harsh.

For sickness I have been given aprepitant which i find much better than ondansatron/ cyclizine etc. It’s taken a while to get on top of sickness.

@HumphreysCorner - good to see you are recovering

@Acinonyx2 - your surgery issues have just been grim. Your experience has prompted me to ask my BCN what can be done in advance to circumvent any issues eg allergy tests etc. I have also asked if there is anything I can do to prevent lymphedema. DM has struggled with hers and she said DGM had it in her legs so there is a family bias. There is a surgeon at the hospital I am at who specialises in lymphedema microsurgery though so have an appointment with him before seeing my general surgeon. I hope your dressings can come off and treatment can progress ASAP.

Hi to all 👋

@JeanLannes and @MrsPnut I feel for your general chemical distress. I also found immodium swung me too far the other way - in the end I never found a satisfactory solution to the problem of see-sawing so fast between constipation and diarrhoea. Took prune juice and that horrid orange stuff when very stopped up.

My post-surgery woes are quite rare - that's a lot of the problem.

Went in today - and had a whole team crammed into my tiny room, surgeon, jnr surgeon, nurse, rads consultant and rads nurse. But surprise surprise - no-one from oncology!

There is some improvement so pico dressings off and new dressings on. But it will be 2 weeks before they can start rads and instructed on no account to take more Kadcyla. I'll have to have new planning session.

There's nothing more to be done. I agree with the delay - I understand that I'm high risk but permanent ulcerating wounds are not an acceptable cost of treatment IMO. I feel like my prognosis is sailing away over the horizon. IRL everyone kind of assumes I must be done with all this by now.

I've spoken to radiology, it's a 6-8 week wait for a biopsy.

This has been going on since may.

Thanks all, I can’t have Imodium due to the risk of toxic megacolon. I have taken some steroids though and hopefully it will settle down.

@Acinonyx2 It must be an absolute nightmare to be the anomaly that doesn’t heal. I’d be climbing the walls.

@kimlo The waiting is awful but that is pretty standard.

Hello, hope everyone is well.

I posted maybe 2 weeks ago when the oncologist said I would need radiotherapy and chemotherapy for insurance after surgery appears to have removed all of a small adenocarcinoma. Thanks to everyone for their advice and kind words then.

Since then I have started treatment, been unwell, and been tired so have not posted any updates.

I started treatment on 21 June (a week ago) so have done 6 out of 25 radiotherapy sessions. The weekend before starting treatment, I ended up being taken into A and E for 2 nights (Friday to Sunday) as my right arm swelled up suddenly and I had a fever. I had received my second vaccine 3 days before, in the other arm. In A and E they were worried about a blood clot and also an infection from the chamber I had implanted in my chest a week earlier for chemotherapy. Had lots of tests and two scans but couldn't find anything. Arm went down a bit and fever stopped so was allowed home after 48 hours, exhausted.

Started radiotherapy the next day, all fine.

That night had to return to A and E as felt my arm wasn't right again, and had developed a new, strong pain under my arm. Spent the night in A and E and this time the scan revealed 2 possible small blood clots. They allowed me to leave in the morning for radiotherapy (siffe?

Posted too soon, sorry. Continuing...

That night had to return to A and E as felt my arm wasn't right again, and had developed a new, strong pain under my arm. Spent the night in A and E and this time the scan revealed 2 possible small blood clots. They allowed me to leave in the morning for radiotherapy (different hospital) but then couldn't do chemotherapy (first planned session; this was last Tuesday) as I hadn't slept all night and was also slightly feverish again.

So my weekly chemotherapy is now starting tomorrow (1st of 5 sessions). I am a little nervous. The drug is Cisplatin.

Radiotherapy is going well. I was nauseous on Wednesday (threw up water about 20 times over the pavement), have had a few short periods of mild fever, and some diarrhoea (at its worst today). Don't know how many of these things are directly related to radiotherapy. I've been quite stressed.

Receiving a daily (huge) injection of anticoagulant which leaves awful bruises but luckily doesn't hurt. 1 week done, 5 more to go.

Hope everyone else is having a good week, take care.

I am @JeanneFrench sorry didn't realise MN had changed my name 😳

@kimlo that's a long old wait!

@Happy36 where was your adenocarcinoma? Side effects of rads depends where it is - is yours on your stomach area? Lot of treatment coming up - hope it goes more smoothly. I haven't had cisplatin myself. Did you have a Hickman line rather than a port?

Acinonyx2 Yes, it's pelvic area.

I had one of these implanted on 11 June ready for chemotherapy which would have started on 22nd but is now 29th (tomorrow). Quite nervous.

@Happy36 Cisplatin is a long treatment and you’ll be glad to have it through the port rather than a cannula. I had to wee into a jug during my treatment so they could check that my kidneys were working properly as cisplatin affects your kidney function.

The diarrhoea is normal with pelvic radiotherapy and often nausea as well but fever isn’t usually a side effect. I do know what you mean though when you run through your body and how you feel assigning them to your various treatments.

Thanks MrsPnut. Yes, I have to drink 2l of alkaline water tonight to start the hydrating/kidney protecting process and there are a lot of fluids tomorrow before (and after) the Cisplatin. The nurse told me, "you're going to wee a lot." (No jugs mentioned, but wouldn't be surprised).

I think the fever is from stress, I'm quite prone to light and short periods of fever anyway.

The nausea was horrible, it's harder than you think to drink the correct amount of water for radiotherapy every day, at a different time (and to have a bowel movement too, but without weeing). The bus doesn't help either (with nausea!)

Actually, how do you go to the toilet during chemotherapy?

@Happy36 that's a port - I got mine in Nov and MrsPnut got one recently. They are much better than using a cannula.

During chemo if you need the toilet they unplug from the wall and you just can go with your drip. I did try not to need a wee during mine!

after I spoke to radiology managed to speak to my consultants department. The woman I spoke to is going to email the consultant and see if theres anything he can do to make it sooner.

This has beem going on since may already between the gp amd scans and waiting. It's starting to get to me, even though I know the thyroid isn't the most urgent.

Acinonyx2 thanks. You must have a strong bladder !

@Happy36 I do! Years of practice! Also I am very naughty and don't drink so much on the day as I should. So don't follow my bad example

@Happy36 @Acinonyx2 is lucky enough to not have had cisplatin. After the 3 litres of fluid there is no way you won’t not visit the loo.
Chemo for breast cancer is much quicker and far less fluid.

@MrsPnut the liquid intake is just advisory. It wasn't very quick though. Afterwards I got 'chemo wee' thing where you we like a horse for a while.

I get the chemo wee thing too with my current chemo. I’m just making the point that with cisplatin you have a litre of saline infused then the cisplatin in another litre of saline and then a further litre of saline. That’s on top of what you drink and eat and why it takes 7 hours to get through.
My last FEC took 2.5 hours and that was the first hour being premeds and some saline.

@MrsPnut that's interesting. My her/per/dox combo took 7 hours but yes EC much quicker (no F here - lot of places have dropped it).

I used to arrive at 9am for radiotherapy and DH would be waiting for me at 6pm to finish. Of course my chemo never ran smooth and I’d have restarts and antihistamines etc.

@Happy36 I'm 6 weeks post treatment for a similar cancer to yours and I'm back at work and feeling really well. My cisplatin wasn't too bad once I got the anti sickness medication correct. It's really important that you stay well hydrated for the cisplatin. I aimed to drink 2.5-3L per day whilst on treatment. Cisplatin can be very hard on your kidneys.
Good luck and I hope everything goes smoothly for you

Sorry to hear a few of us have got various niggles and issues to contend with at the moment. I'm back in the doldrums because the shine's worn off my good news about the clear lymph nodes post-surgery - I read a story about a woman with BC having been given the "all clear" (whatever that is, they always use that term in the media) then 6mths later finding secondaries everywhere and not lasting long. Of course, there are 100s of positive stories but our minds don't linger over them, do they?

I started following some twitter cancer feeds which I initially felt solidarity with and appreciated the dark humour but now I don't think it's good for me. I've also had someone refer to my mastectomy as a "boob job" and someone else asked me how long my convalescence would be. Can one convalesce from cancer??