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.

@ChocolateandCheese I am so, so sorry to hear your news. It must be incredibly hard being on your own in hospital and dealing with this. Have they given you an idea of when you might be able to get out? I've found this thread a great comfort - sometimes coming on in the middle of the night when I feel there is nowhere else that understands. x

@ChocolateandCheese Terrible news and in such difficult circumstances. Can you tell us more? You are not alone - we are here.

@ChocolateandCheese so sorry to read your news. I can't begin to imagine what you're going through.

Chocolateandcheese sending you love x

@ChocolateandCheese you poor thing, my heart goes out to you. You are definitely in the right place with the nicest ladies on Mumsnet here. Sending you love and hugs xxx

@Top I think that is it with well meaning friends - they have sorted out how they think a cancer patient should be and we have to conform. In my case with the friend I am now having to avoid, we have a mutual friend with stage 4 BC at a social group we all attend. Everyone often comments on how brave and 'inspirational' this lady is. I have said privately to the friend I am avoiding that I now have real insight as to how it might be manageable to put on a brave face for an hour but you never know how she is suffering behind closed doors. Even that comment fell on stony ground .

@backformore I haven't had any Christmas cards yet but I am braced!

Thanks all, it’s just so hard.
The cancer is in my rectum (primary) with a large number of secondaries in liver and both lungs. The multi disciplinary team will meet on Monday to discuss protocol but looking at combination of radio and chemo and then surgery.
My DH knows it’s not curable but we are going to tell the DCs (DD1 22, DD2 19, & DS 16) together when I get out of hospital:
How do I access support from, for example, Macmillan? And is there other family support I can have?
Thanks and I promise when I’m in a better head space I’ll try and support you all too and not to just ‘take’.

Don't you worry about that for a minute- to answer your question, your oncology team should be signposting MacMillan etc, so do ask about it tomorrow .

@ChocolateandCheese don't be silly, there is no such thing as 'taking' on this thread, we just all support each other. If you want a chat with Macmillan before tomorrow you could ring their helpline 0808 808 0000. They are open 8am to 8pm 7 days a week. There is an automated message when you ring asking if you need emotional support/fundraising/nurse advice and you are then straight through to a real person. I have a call once a week from them and also ring them in between for support and they are excellent, no rush and they understand. Xx

@ChocolateandCheese this link might be useful too:

www.cancerresearchuk.org/about-cancer/coping/emotionally/support-for-children-whose-parents-have-cancer

As well as the big cancer charities your hospital might also have links to other smaller organisations that can provide support.

A slightly random thought, please ignore if unhelpful (and bear in mind my children are a bit younger), but one thing we did which has seemed to help was to take their questions to the oncologist (I told them I was writing a list of questions to ask at my appointment and they gave me theirs to add), this approach could help if they have questions you can't answer, and for my two it helped them feel part of what was happening as well as getting their questions answered xxx

@ChocolateandCheese that's terrible news for you, I am so very sorry. Please do stay here, there will be bucketloads of support for you and you absolutely don't have to think about trying to help anyone else. I do hope you can get home soon, being in hospital without being able to see your DH must be so hard.

Hello to everyone else.
@FizzyOrange I am sorry you have the definite dg of ovarian cancer. You don't have a date for surgery yet, do you? I am sure they will try to do it as soon as possible but the pandemic complicates everything. Poor you with such awful constipation. If you can stand to drink it, Movicol seems to be effective.
@InOtterNews will be thinking of you on Wednesday when you have the PET scan and very much hoping for good news.
@Shrillharridan hope to God they get back to you quickly after the MDT meeting. It's disgraceful how long you've been hanging on.
@AlbertCampion glad to hear you are feeling a bit better - or you were on 10th - hope still the case!
@backformore so sorry about your diagnosis. Have you had all the tests now? Good luck with the oncology meeting tomorrow, it will be face to face I assume? Completely understand why you might request a double mastectomy.
@Acinonyx2 it is so crap when food makes us ill. And I'm sorry that you too are facing a long stretch of chemo. Maybe we'll finish around the same time, we could have a virtual double celebration. Also sorry you have additional worries re money and work; hope something can happen to ease those concerns.
@gillmoregirl really good that they got clear margins at surgery, and while I don't really understand the grading of bowel cancers, I gather yours is not at all advanced, is that right? It's never nice facing chemo, but as you say, reassuring to know that it will deal with any stray nasties.
@Noidea2114 how did your pre-op appointment go?
@MrsPnut was your breast surgeon helpful and informative? Good luck for the start of treatment on Wednesday.
@Tean791 the anxiety waiting for tests and results is awful - really hope it turns out there's nothing more to worry about. But whatever happens, you can rely on this thread for friendly advice, sympathy and support.
@ElaineMarieBenes nice to see you popping up - how are you doing? So that's about six months till you can come back to the UK? Are you marking off the days on a calendar? (had a swift image of you banged up in a Furrin Jail, serving the last of your long sentence for, um, what? Espionage?)
@KentishMama hope your nasty persistent cough buggers off soon and that your bloods perk up.

I'm still very much suffering with mouth ulcers, feel like they're getting worse after four days of mouthwashes. I can't open my mouth properly, my tongue is swollen, and the list of foods I can manage is very small - basically soup, soft things like fish pie, cottage pie, and porridge. And I keep crying. I'm so sorry for DP having to live with me, although she is being v kind and forgiving. Also neutrophils were so low on Wednesday - 0.2 - that I have to repeat bloods tomorrow morning to see if I can still have chemo. Fuck it all. Warriors, huh, I am a snivelling wreck.
Sending love and warm wishes to everyone here.

@Bloodybridget the mouth ulcers sound horrendous and I would be so miserable like that. You poor thing and not being able to eat properly too is awful. Sorry you are crying all the time, I cry several times every day and it is so wearing. I don't know much about chemo - are mouth ulcers a constant side effect and is there anything they can do to raise your neutrophils? I still don't have my treatment plan so I am back to being the cancer secretary tomorrow to start chasing it all up again. I was just told at my bedside that the growth is malignant and they will discuss my case (again) at the MDT. I came out of hospital on Thursday afternoon and felt unable to start up with phone calls and emails again on Friday, I just wanted one day away from it. I had a panic yesterday and thought I had part of a cannula needle stuck in my arm so went to A&E twice and the second time the triage nurse was really horrible to me. I am starting to understand that this is the 'fight' against cancer,, a lot of it for me so far seems to be struggling with various HCPs.

Oh @FizzyOrange, that is really horrible that the triage nurse was so unkind. Someone like that should not be working with patients at all. Also that you are having to keep calling and chasing, it's really bad.

It's Caelyx, the new drug I'm getting this time, that's causing the mouth ulcers. Last year I hardly had any such problems.

Now the neutrophils are so low, I think they just have to come up on their own, but there are injections they can prescribe for me to do post chemo that should stop them getting as low next time, I had them several times last year. The CNS and a nurse on the chemo ward who phoned me on Friday were both hopeful that they would be OK.

@Bloodybridget I think a few of us have filgrastim injections post chemo to up our WB count - and although they are a PITA they really do seem to work (I actually worry that I have too many WB!).

I have mucositis - so soft food only but it is nothing like as bad (no ulcers) and actually a bit less this cycle. That really does sound seriously tedious. I find bodily misery crushes mental resilience.

I'm also curious about @KentishMama 's cough as I now have a persistent cough which I think is due to the Herceptin. (I wish my body was as active against cancer cells as it is against all the drugs )

Can someone post the link to @AlbertCampion 's blog so I don't have to trawl for it?

For light relief - here is the story of my morning adventure. I put on my new wig for the first time and went to the garden centre (haven't been in a shop since I was diagnosed). There was a long queue and I chatted to a girl with a dog – in my wig – for all the world like an everyday normal person with hair.

Inside things were going well when I got familiar stomach cramps and started to feel a bit dizzy. I thought: oh no – you absolutely cannot get the shits in here. I clenched hard. I probably should have just left but I wanted some fancy cake and chocolates so I just kept clenching, channelling Jane Fonda until my mission was accomplished.

Problem I realised, is that I usually go out in the afternoon when everything that is coming out has gone and my system is more settled – before the evening meal.

I feel Like I scaled the Matterhorn or something

@FizzyOrange most of the nurses are so lovely but you know I wonder if sometimes the profession specifically attracts some mean people with no empathy - or worse.

@Acinonyx2 My cough is still there.. It is resistant to antibiotics and an asthma style inhaler also didn't do anything. The doctors are puzzled, but the chemo nurses are sure it's a chemo cough caused by yucky post nasal drip. They said the absence of hair in my nose causes a constant drip down my throat that irritates it. Of all the explanations so far, this one makes the most sense...
I'm not on Herceptin, by the way - "just" Paclitaxel after 4 rounds of EC.

@Bloodybridget - yes my Audrey hat and sunglasses gave me away! And yes I do want to start marking the wall by the side of my bed!

I’m really sorry about your mouth ulcers. I did have really low neutphils for a week or so and couldn't stop crying (didn’t want to but it was involuntary!); but was given a blood transfusion and they have shot up and the crying has stopped! I really hope you can get something that works for you.

@KentishMama that does make sense and I hope mine is the same. I'm absolutely sure there is no infection causing it. Have you tried taking antihistamines? I take a clarityn every day and it helps - in fact I'm always eager for the next one. I looked into the use of antihistamines thoroughly to check this would be OK and found that some are definitely better with chemo than others - so Clarityn but not Benedryl (use of Clarityn is actually associated with increased survival odds). They help everything a bit but also help dry the drip and help the cough.

Just catching up.

@ChocolateandCheese I'm so sorry you're finding yourself here, and having to deal with such a huge shock mostly on your own. Definitely lean on us! The early days are the hardest regardless of how severe the diagnosis is, I think, up until the point where you get a treatment plan. Sounds like you'll hear more after the meeting on Monday, and then hopefully focusing on what can be done.

@Bloodybridget Would Filgastrim or Pegfilgastrim (slower release - only one injection per cycle) be an option to help your neutrophils and your immune system generally? I wonder if the mouth sores might also get better if your immune system picks up.

@Acinonyx2 I've heard that people take Claritin to help with bone pain during Paclitaxel as well, so I'll ask the nurses tomorrow. Maybe it'll help with both the cough and bones! Win-win! I massively reduced the supportive meds this cycle (stopped Lansoprazole, no pain killers at all) as my liver was struggling, and my bloods on Friday were much improved (although they were still elevated, just not so much). So maybe I can add one new drug without doing too much damage...

I only have two cycles left - tomorrow and on 29 Dec. The end is in sight!

@Bloodybridget so sorry you're having to cope with that. I really hope you get some relief soon. I also found filgastrim injections made a huge difference to my blood counts, really hope that future cycles are much better for you.

@KentishMama great that the end is in sight! Originally I should have been having my final dose of docetaxel on new year's eve but now that I'm on weekly paclitaxel it'll be mid Jan before I'm done. 6 weeks and counting! I got so fed up of repeat infections, especially given my hospital stay, that I'm sort of isolating from the rest of my family for now at home. Just til the Xmas holidays to try to avoid all the stuff that comes home from school. It's far from ideal but I am feeling much better (thoough I'm also left with a cough, presumably from the last virus/chest infection I picked up). I even managed to cycle to chemo and back last week which felt really good but not being able to interact with the children normally is going to have to be a short term measure.

Sorry to hear so many struggling at this time. @Bloodybridget I really hope you get relief from those ulcers soon. Sending you massive hug. My tumour was low grade but somehow my lymph nodes have become involved so cancer is locally advanced stage 3 but I'm hoping chemo effective.

@ChocolateandCheese I'm so sorry to read this. I've joined bowel cancer uk forum and there are stories there of people with similar diagnosis still going strong. I hope you get your treatment plan soon. Being in hospital on your own at this time is so hard.

I agree with you all regarding toxic positivity from family/friends. I don't feel like a warrior or strong at all. I feel like I'm caught up in the eye of a hurricane at the minute and I'm just waiting to see where I land.

I'm finding it hard to concentrate (and haven't even started treatment yet) so please forgive me for not mentioning you all individually but I am keeping up with posts and thinking of everyone. Xxxxx

@Acinonyx2 I wonder why some people go into nursing with the unfortunate manner they have. I read on another thread that a terminal cancer patient had made the decision early on to die in a hospice rather than a hospital so as to avoid any 'attitude' from the nursing staff and I found that ever so sad. I did smile at you in the garden centre 'like a normal person' but how dreadful to feel movements down below when you're out. For the last few weeks I have had some bowel issues with real urgency plus since my enema on Wednesday rather more ahem quantity with no warning whatsoever tmi. I have been wearing tena lady pants which are actually fairly discreet under loose trousers. I never thought it would come to this.

@Bloodybridget fingers crossed for your neutrophils tomorrow.

@FizzyOrange A wig AND tena pants - what further indignities await us? 'It started with a kiss/ Never thought it would come to this...'

I'm getting through the Xmas cards and adding in DH's letter that includes my BC. I feel like I'm sending out a distress beacon - but I would want to know if it was any of them. I've moved around such a lot my Xmas card list is quite long with many people I haven't talked to for months - or longer. It's going to be fascinating to see what happens.

@Acinonyx2, here is the blog link.