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.

@Shrillharridan the suppository didn't work as I had a total blockage right at the entrance tmi. I have awful haemorrhoids too so it was pushing on those. After childbirth, it was the most painful experience I have ever had. I have had a telephone appointment with my GP this morning about my hospital stay and he has given me some lactulose to try.

@Starmer and @TopOfTheCliff I am wondering if GPs have a special code for cancer patients so reception staff are aware? I forgot to ask the GP for my repeat of Lansoprazole at my appointment this morning and my surgery absolutely refuses to take repeat requests over the phone. I only wanted to send my son in law out once to get my meds so wanted it today (I need the lactulose) and it was absolutely no problem for the receptionist to organise this!

Omg you poor thing fizzy
I'm glad it's sorted now. Are you on anything long term to keep it at bay?
Movicol or similar?

Oh crossed posts!
Do ask for something stronger if you need it. I take Laxido when necessary.

@InOtterNews thank you for that - and yes, I'm also in favour of letting it all hang out for a bit! There have been days when I've cried several times but I always feel a bit better straight after. I'm in Canada and have a BC survivor friend in the UK, so can message her at night - I guess I could post here, too? I hate feeling weak and like a sap on people. DH especially is being amazing but I can't have a nightly cry on his shoulder for the next year, surely??

Sleeping pills, some anti-anxiety meds definitely the way forward, I think. And exercise, as we were saying before. And time - I just need to get out of this nightmare phase of not knowing and dreading each next step and into some kind of "new" normal routine. Meeting with onc on Monday and as long as she says the scans haven't shown anything new and terrible I think I'll manage not to break down. Amazing how the defintiion of "good news" changes.

I meant to say, I'm so sorry that others are suffering today, too. I'm thinking of you all xx

@InOtterNews I can relate to the funeral planning as I have been very anxious today and was thinking earlier about what music I would like. I take anti anxiety medication which takes the edge off the physical symptoms but doesn't address my dark thoughts.

@backformore oh yes, the definition of 'good news' does change with a cancer diagnosis. My only real symptom of OC was indigestion and bloating which the GP put down to gastric reflux. I was so relieved as I had been fearing a stomach ulcer and wondering how I would cope with an endoscopy. Now a stomach ulcer seems quite trivial in comparison.

Fizzy, how bloody awful for you- the Christmas present you never wanted, eh?

backformore you can definitely come here to sound off when it gets to much, this what we're here for .

Love to everyone, you warrior women!

@BitOfFun, thank you. (And I totally get why people resist the warrior tag! I don't feel like a warrior At All. I feel like a complete wimp who's being dragged into this kicking and screaming)

@FizzyOrange exactly. To think that a couple of weeks ago I was anxious about a mammogram...

Interesting that the anxiety meds mainly address physical stuff. I'd like to stop throwing up in the mornings. And lately I've been getting very trembly and shivery, too. All new to me (though anxiety isn't).

@backformore I'm on beta blockers for anxiety which calm me down a bit. Before I was on them I was waking up in the night shaking and sweating. Saying that when I went to A and E my heart rate was so high I started with an ECG . Are you taking anything for it? Like me, you are early on to all this and it is a terrible strain.

One of my closest friends has quickly become the Chief Inspector of the Positivity Police. I phoned her this week to tell her my diagnosis and she reminded me over and over again how essential it is that I 'stay positive' even though I have explained on several occasions that I find that so difficult. Now I feel I don't want to talk to her. It saddens me that this illness is isolating me from people whom I have known for years.

Backformore I had a port fitted the day before my 2nd round of chemo. I posted about it earlier in this thread. I found it an absolute godsend, as I have terrible veins and am really hard to cannulate, which made it much more stressful for me and the nurses! I wasn't sedated when I had it, and was terrified, but the staff doing it were so lovely - one nurse held my hand, while the doctor did the procedure. There were a couple of seconds where it was painful/unpleasant but it was literally seconds, then it was over. I think the worst part was the following 2 days, when I had to roll out of bed to get up, as sitting up (which involves tensing your neck - who knew???) was so painful. I healed really quickly.

I had all of my treatment at the Christie, and had everything through my port - they took bloods (and left the needle in when I had chemo the following day, to save on making the port site sore - sounds yucky if you're squeamish like me, but it's covered up so you can't see it and it doesn't hurt) and gave chemo through it. I was unlucky and picked up infections after every round of chemo and was an inpatient at the Christie for at least a couple of nights per cycle, and they also took bloods, gave antibiotics and fluids, and did blood transfusions via the port, so I was glad I had it. I have to say, I found out I had more grit and determination than I ever gave myself credit for, as I felt sick when they told me I needed one, and honestly didn't know how I'd cope having it done - but I did, and it was well worth it (although I was very glad when it was taken out!).

I'm herceptin positive, and have been having herceptin since January - only got 2 to go now, which is weird thinking about it all - on one hand it's dragged and felt like a very long stressful year - on the other, I can't believe I'll he finished active treatment in 5 weeks! Herceptin isn't as tough as "proper" chemo, so my hair is growing back now. I had a 100% response to chemo, which was confirmed after surgery. I only had sentinel node excision with mammoplasty to remove the lump - and it's my armpit, rather than breast, that is still the most annoying/painful!

I asked my GP for anti-anxiety drugs as soon as I was diagnosed as I really wasn't coping well - they were a godsend, and I still take them - having never experienced anxiety before, it was a massive shock, and I'm relieved there's medication available to help, and I still take it now.

I hope everyone has as good a weekend as possible.

@Zorgothslugofdoom thanks for that info - it sounds as if we’re on a similar course! Another vote for the port 😳 Where does the cannula go otherwise - inside elbow or back of hand?

Glad to hear good things about herceptin and anxiety meds!

@FizzyOrange I’ve had the night sweats too! Wasn’t sure if that was a symptom or part of the anxiety, so interesting to hear I’m not alone. It’s horrid.

I’ve only told a few close friends and fortunately haven’t had anyone preach yet. But I am struggling with engaging with people who don’t know. I’m ashamed to admit I hate the fact that they’re all carrying on with life as normal while I can’t. Received a couple of really jolly emails today that I could only reply to with the briefest response - it’s as if they’re living in a parallel universe. I know it’s not their fault and up to me to inform people, but I’m just not ready. Have come right of Facebook for the same reason - it just feels unrecognisable right now.

@backformore I started chemo having cannulas each time (usually in the straight part of my forearm) which was fine to begin with but I was unlucky and needed lots of IV antibiotics halfway though via several trips to A&E and it became a real struggle to find suitable sites to cannulate. They also switched me onto weekly chemo and consequently I now have a picc line. It's sited in my upper arm. I wasn't keen on the idea of it initially but it was very straightforward getting it fitted and chemo sessions now seem like a doddle, they just plug me in! In hindsight I'd have been better having the picc line sooner.

I hate telling people too! Particularly hate it when people tell me how good cancer treatment is nowadays and it's all going to be fine.grrr

@backformore after the first beta blocker tablet, the night sweats instantly stopped. The sweats were making me even more anxious so it was a real relief. I know what you mean about hating the fact that everyone else is carrying on as normal. I had someone, who is aware of my diagnosis, ask me yesterday if I am ready for Christmas!

@Tean791 oh yes I have had that from people, how there are so many new treatments nowadays etc. and how 'if anyone can beat this you can, you strong lady' . I feel embarrassed telling people and also embarrassed that I have 'let myself' get into this terrible state of health. I've informed most people over text as then they have time to formulate their warrior response and I then can choose when and how to reply.

@Tean791 Oh how I hate that! I've taken to routinely stating it's stage 3 in the hope that might stave off this kind of response but it has limited success! Mostly I have to let it go - but those I spend a lot of time with - I have a retraining strategy along the lines of: if you thought there was x chance of dying, going bankrupt or a huge meteor hitting nearby don't you think you would have to take that outcome seriously and plan for it rather than ignore it and just assume it won't happen?

and now all the Xmas cards are arriving: 'Hope you are well....' Dh has crafted a Xmas letter to send out.

@backformore
John Gardiner, Nigella's husband wrote a book called 'Cowards Get Cancer Too' and Danny Baker said 'I'm not the fighter. I'm the battlefield.'

@FizzyOrange you are absolutely spot on about friends. I have one lovely gentle friend I have known 26 years who came round for coffee on a bad day. I told her how scared and ill I felt with chemo and even cried. After she left she texted to say how inspiring I was being so brave and positive and strong. She clearly ignored everything I said that didn’t fit her preconceived notions of how the Brave Cancer Patient should behave.
@Acinonyx2 the other ignorant thing that winds me up is the people who demand to know my stage or my prognosis but insist it’s great they caught it early. Hang on! I might have stage 4 disease and do you really want that conversation in a Tesco car park? Better just to wish me well with my treatment and offer to bring round cake!
It’s actually easier being isolated because I avoid all the well meaning blunderers.
Christmas cards are a source of wrath too this week. Either people moaning on about lockdown and not being able to go on holiday this year or hoping I am fully recovered from the spot of bother I had back in June. I’ve barely got going yet mate there’s still nearly a year to go!
I must be tetchy today I think I will open the cherry brandy chocolates my SIL gave me this morning! I was going to ration them but I think they are probably medicinal
Regards to all. I’m doing one legged Christmas tree decorating fully aware that after Christmas it will be one armed removal of decs. Sigh.

Hi All, sorry for the morbid post but need to off load. If there is a more appropriate thread or you would rather I started a new one please let me know.
My cancer (which I didn’t know existed this time last week) is not curable. They are looking at palliative care and have told me I have months left. I’m still in hospital, my DH and DCs haven’t been able to visit so I am dealing with this all alone.
Telling my DH was hard but telling my children will be hell.
Sorry

@ChocolateandCheese I'm so so sorry to hear that, what a terrible shock you're having to cope with and in such difficult circumstances. This is definitely the right place to post, no need to apologise ever and lots of virtual hands to hold yours.

@ChocolateandCheese. So sorry to hear your news, and my heart aches thinking of you being on your own in the hospital. Do you know when you might get home? Could DH tell your children, or do you feel it needs to come from you?

I totally agree with @Lubballoo. This is the right place to post, and let us try and offer whatever support we can.

@AlbertCampion, I've just read your amazing blog. More more more, please!

@ChocolateandCheese, that's a huge thing to deal with, and I know, having had a diagnosis of incurable too. I'm still here after two years though, as they've been able to treat it to contain the growth. It That treatment stopped working a few months ago, so I'm now on palliative care and a different hormonal shot each month. Do you feel up to saying what kind of cancer it is, and where it's spread to?

You poor darling, stuck in hospital on your own, it's wretched . Please rant as much as you like.

AlbertCampion linked earlier to a video about how to tell children ( here, if it helps ) which may give you some ideas. Sending you so much love ❤️

@ChocolateandCheese welcome to the thread. You must still be in shock. I know I was for at least a month after diagnosis. It’s so hard to put yourself first and not worry dreadfully about how everybody else will feel about you news. There is wonderful advice from Macmillan and similar about how to explain to children what is happening in an age appropriate way. But at the moment you just have to be kind to yourself and get through the days. Feel free to vent it’s what this thread is for x

@ChocolateandCheese I am so, so sorry. You are not alone - we are all here with you. Please be kind to yourself right now. How old are your children?

@ThymeOut thanks - I will look up that book, too. Totally agree about the battlefield metaphor.

@FizzyOrange yes, and the Christmas queries - I had one yesterday asking for my address for a cookie swap thing that began "I hope this finds you well". Can't wait for "best wishes for a happy and healthy new year..."