Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

MrsWooster
Stomachameleon
Fantasea
Silkierabbit
mowly77

Thank you all for your suggestions. I wanted to be armed with some tried and true remedies before trying to get through to the GP again. Eating is something that I have to force myself to do, and Codeine makes me pass out. I was scheduled to have further surgery to remove my bowel, but a week later it was found to have spread to my lymph nodes, so they cancelled. My belief is that it's for financial reasons.
Love, and the best of luck to each and every one xx

Orpheline So sorry for what you are going through. If you think its for financial pressures then maybe worth a complaint to PALS and see if that can get you more treatment. I think there is a Facebook Group stage 4 deserves more which may have people on who know more about this than me. Macmillan do have cancer nurses you can phone, they may know re pain relief options. They knew about PICC and blood clots and looked up a manual for advice. Hope you can get help.

@Orpheline could you try Butec patches.? It's morphine delivered by a patch. I found it worked much better than Oramorph at giving continuous pain relief. Available in various strengths. My GP prescribed it for me after ovarian cancer surgery.

I'm more a lurker than a poster on these threads though I have cancer.
@balkanscot so sorry to hear about your DH.
It's so unfair and there are no words.

Orpheline Sp?

Can't scroll back to read. Irish Ferries seem to have hi-jacked my Mumsnet.
There was a nutritionist attached to my Colo-rectal team. Perhaps your CNS could get her to ring you? I found the coffee flavour Fortisip the easiest to get down, but obviously a matter of personal taste.

Balkanscot Can't believe your update. So cruel. Thinking of you all.

So very very sorry @balkanscot nothing useful to say at all, just that life is a joke. A very unfair and awful joke. You & family are in my thoughts.

@balkanscot I am so sorry that's spectacularly shit.

@balkanscot I've just been keeping an eye on your posts and am sending my love and much sympathy along with other posters. I wish your DH the best possible outcome, but in any event this is a terrible time for you and your family. Am mentally holding out my hand to you.

@balkanscot I'm so sorry to read your update and my thoughts are with you x

@balkanscot I'm so sorry, what absolutely shit news. Big virtual hugs to you all xx

Mr Floof is home and DD has sent me this very proud photo, she has catnapped him.

@Silkierabbit he’s absolutely adorable 🥰

Greetings all from Scotland. I’m sitting in windy Anstruther outside a coffee shop catching up on you all. The sailing has been fantastic! I have done 700 miles so far while DH has cycled 1600 miles. We have raised about £2500 for Macmillan to date and have had lovely visitors pop up when we are in a port. I was so sorry I didn’t meet @MrsPnut in Grimsby but we were only there for 12 hours.
Yesterday I crossed the Firth of Forth and stopped off at the Isle of May to see the puffins. I loved the BBC podcast Planet Puffin and listened to it during chemotherapy and vowed to visit. My dear friend who died of melanoma 5 years ago used to come with me puffin hunting on the west coast and she was with me yesterday.
Cancer is cruel! It robs us of years of our life and takes away our loved ones. I feel so lucky to be recovering from apparently successful treatment even with the damage done to me. My friend campaigned so hard to be in trials for the new biological drugs and nearly made it.
@balkanscot look after yourself if you can. Put your oxygen mask on first before you help others. Sending love xx and feeling a bit at a loss what to say.

The ships cat says hello to Mr Floof and best wishes to all. Keep going!!
Onward tomorrow to the north! We might be in Orkney next week with luck!
Top xx

Gently checking in everyone. Biopsy done and now waiting again. Still all over the place, scared shitless. But it is what it is. Balkan, I am so sorry to hear your update and how hard it is for your ds. My ds also 10 has SN too and I do know how relentless it is. Thinking of you, all of you.

Hello Mr Floof! He is very floofy & cheering @Silkierabbit Hope he is settling in nicely and having lots of fun and bringing joy.

My update is my oncologist is now on my shit list. Sigh. Are there any medical professionals that aren’t at this point? She flat out refuses the Marsden’s recommendation, & my own feeling, that I should be having chemo every week as it is in reduced dose of 25% due to my incredibly rare red blood disease. She just said she wouldn’t do it & that chemo could kill me at a more frequent dose and I’m like uh wouldn’t there be warning signs … & this cancer’s gonna kill me quickly anyway because you’re not treating it properly … and the Marsden knows all about my blood disease & they’re actually getting me a specialist opinion on it unlike you dicks who fobbed me off because you don’t know anything about it.

And THEN she had the gall to tell me to “be positive”!!!!!!! Oooh did I give her the cult of positivity lecture. Yes I did. I was pretty upset at this point and trying not to cry. She couldn’t get me off the phone fast enough.

Now I have to call the sodding Marsden again and lobby for my own effing treatment. Again. She was very dismissive of the fact they want tumour markers & and MRI, the latter so obviously cost. She was making allusions to ‘the Marsden do that a lot because they have more equipment & staff.’ Uh yeah they actually take care of their patients. Bit of oncology rivalry I feel. Kicker is I haven’t even had the three chemos in a row yet!!! I was hospitalised and missed one as was on antibiotics.But I’m getting a break next week anyway because that’s The Schedule & she shalt not changeth it. I’m like at least give me the three in a row then I’ll agree to a break. Nope.

ah well.

@balkanscot can’t imagine how you must be feeling. But thinking of you.

@mowly77 How is your current onc proposing to measure if the treatment is working if they arent taking tumor markers or some form of imaging or other measurement approach? To be fair, when I was at Barts they didn't take tumor markers either, so I have no idea where I started at, but at least I got a load of MRI imaging because they thought my spinal cord was compromised at one point.

Marsden does take my tumor marker measures, but we never discuss them. I find it frustrating at times that in the US, patients have full and complete online access to all their medical information as soon as its available including all imaging and bloodwork numbers and here in the UK its not possible. Its a federal law - medical providers have to do it. I know ladies who track their tumor markers and bilirubin and calcium numbers on spreadsheets and can spot when something is starting to go sideways. Now tumor markers arent always beneficial for everyone, but having an extra set of eyes on whats going on helps the patient be more informed and raise questions at their oncology visits. I want to be a partner in my care, not patronized.

Were you able to discuss moving your care over to the Marsden completely?

@balkanscot I was very sorry to read your update - glioblastoma is such a bitch of a disease and so unfair. Ive always wondered how some people are burdened with enough sorrow for three or four people and then others, usually complete jerks, never seem to ever be touched by terrible medical concerns or challenges. You sound like you know what needs to be done for your son and husband, and will do it, but be gentle on yourself. You have to find a lot of strength for this and it wont happen overnight, take the time to grieve too.

@HerbalRefreshment yeah she says scanning and actually asking the patient are more reliable & says taking tumour markers old fashioned and often not helpful. Well I think I’d fine them helpful and I want them. You can ask the Marsden for them though. There’s no reason not to give them to. I’m going to start asking my cancer care nurse to give me my rb counts coz they never do.

We did discuss moving my care to the Marsden at the time but because it’s weekly I thought I couldn’t cope with that because the piriton and steroids mix make me feel very tired! So the journey back …And they agreed too much to come in weekly but that was when they thought my oncologist would play ball so I could have their plan carried out locally.

BUT my aunt lives in west London so am considering switching all my treatment to the Marsden and staying at aunts overnight for chemo days then I won’t have to tackle a long journey home really tired. DP won’t be able to take me every week into london because of cost and work and I’m not overly happy about taking tube. I would probably take a train up (fairly quiet) and Uber to hospital and then Uber to my aunts. Stay the night sleep the chemo off come back. It’s the beginnings of a plan anyway.

@mowly77 That's really shit of your oncologist. Just when you think you're getting on top of it and you will get what you deserve someone shoves the knife of doom into your party balloon. Your plan to transfer to the Marden and stay at your aunt's seems a sound one.

@balkanscot I'm so sorry. My Dad died from this type of tumour but his had been growing in a space behind his ear very slowly for, what the doctors thought, was about thirty years if not longer. I sincerely hope that your husband's has been caught early enough that treatment works but I can only imagine what you are going through.

@Silkierabbit a warm welcome to Mr Floof - he looks utterly adorable.
@Lndnmummy Here's hoping that you get the all clear.

My treatment has turned into a shit show again. I'm due to have my next chemo next Friday but didn't realise that I hadn't had a treatment schedule through until DP asked how he should book his work appointments for next week. So I tried to get through to scheduling all day Thursday and tried again all day Friday and finally got through to an actual person at 5pm. It does appear that the oncologist I spoke to (on the phone) two days before my last cycle failed to do any paperwork other than to do the prescription for the chemo drugs - this is the same oncologist I saw (when I got the news about having to have chemo and when I signed the consent forms) who looked so bored/unengaged that I sat there wondering when the real oncologist was going to come in and answer my questions properly. So the scheduler booked me in for next Friday's chemo but I've got the last slot which means I won't get home until 7-8pm but she did book in the next one for June as well so all good. I then mentioned that I hadn't had an appointment letter to see Oncology next week so could she tell me when it was....big silence.....nope, no oncologist booked either. All the oncology appointment slots for next week are full so she says I'll book you for next time. Great I said but if I don't see an oncologist next week then I can't have my chemo can I?.....big silence....um no, you can't. So, we had to leave it that she would email the consultant's secretary and the secretary would phone me on Monday but I'm not going to hold my breath. I suspect that I'm going to spend next week calling all and sundry trying to speak to someone or if I don't hear then just turn up on Friday and watch everyone run around trying to find an oncologist to do my consultation and prescription at 4.30pm. The weird thing is that I got Tuesday's blood test/PCR appointment through about two weeks ago which is why I didn't chase the other appointment letters as you kind of assume that if it's all the same unit then everything gets booked at the same time but apparently not - it's three different departments failing to work together under one banner.
Anyway DP has had to go ahead and book his work appointments and will not be anywhere near home next Wednesday which is the usual oncology day so next week will be interesting as I can't get to the hospital easily and I have stuff that I need to discuss with the consultant in person. I'm so pissed off.

@Silkierabbit Mr Floof is indeed supercute! Could you loan him out for therapeutic cuddles to everyone on the thread? As part of my cat rescue volunteer work we take cats & kittens into care homes to visit the residents. It's so rewarding. I always say kittens should be made available on prescription!

Thanks Haunted Yes it would be great if you could get kittens on prescription. I would love one at chemo too though think they would be playing with all the wires DD has catnapped him so even we cannot get that near so no chance of being loaned out whilst she is home sorry though suddenly realised tomorrow I'm at chemo, DH is taking me, DS is at school and DD has her first two GCSEs so we have found a MC kitten sitter, one of DDs friends. After that one of us is here every day for the next month and normally we are always here apart from chemo days. DD is totally obsessed with her baby and he is always on her.

GCSEs starting tomorrow and chemo number 6 and continuing trying to find a school solution for DS in year 10. We also have 2 new silkies arriving later and silkie will go back outside as silkie and rabbit have now started not getting on a as rabbit is very greedy and eats all his food and the silkies. The silkie finally snapped on Friday.

I have had a really hectic week of meetings re schools. Been going loopy with the steroids, think they give me delusions and I send random, very strange e-mails out on those days about near death emergencies and get very distressed then on Thursday I wonder what on earth happened. Am talking to team about it and they have suggested I stop steroids but will see oncologist on Thursday to discuss more as they said help with allergic reaction, swelling and sickness and not sure if increase success rate, nurse said not but want to check. Feeling super tired and not that well. Plumber came on Wed so at least bathroom sink got done and Mr Floof arrived.

Love to everyone and new Mr Floof picture.

Well done on your adventures Top

Sounds like a good plan to move to Marsden Mowly I might even be tempted to stay with your aunt full time if that's an option for you and your DD.

That is so genuinely shit @MothralovesGojira so utterly shit.

But don’t give up.

Hello everyone, I hope it’s okay to post in here, if not just tell me! I am sorry we are all on this thread.

I’m not diagnosed yet, so I’m still holding out a little hope that I don’t have cancer.

Back in February I had a bit of a tummy bug, and noticed it didn’t really settle down after that. I had an upset tummy for about a month then just some tenderness and bloating. I went to the GP who suggested I probably had post infectious IBS, but did some bloods anyway including the CA125. These came back at 420 when normal is under 35.

I was fast tracked for an ultrasound, where they discovered 2 very suspicious looking masses on my ovaries, I’ve since had a CT which confirms it seems to only be there (although there was a “haze” over the omentum which could be a bad sign or could be a bad photo), but the doctors are still saying they feel it is likely to be cancerous rather than benign (don’t ask me why, I do not know other than it’s solid and doesn’t look like a typical OC mass?!).

I had an ascitic tap last week which drained off 3L of fluid and made me a lot more comfortable, this has gone to be biopsied. I’ve also been booked in for a debulking surgery for June.

I’m 36 and have 4 children at home so I’m absolutely terrified to be honest. The fact I don’t have a diagnosis gives me hope but they’ve been very open about feeling this will be cancer, so I don’t want to allow myself false hope. I’m feeling very down and sad really about future prospects.

@Silkierabbit I have seen some of your posts re Mr Floof, would you mind PMing me which breeder you used? I’ve been looking into getting an MC for about a year and have now decided that I will use it as an incentive and something to look forward to, but I don’t know how people find nice breeders!

So sorry AGreatUsername I hope it turns out not to be cancer, never good when they say they are expecting cancer although with the breast they seem to have categories of probably cancer and definitely cancer. I got the definitely cancer which kind of rules out any glimmer of hope but at least you know. The probably cancer one sometimes it is cancer, sometimes its not. The additional things on scans are very often not cancer, I had about 8 additional things come up and one by one all dismissed and certainly for breast they have not cancer, indeterminate and cancer likely and they tend to grade on the side of caution.

Its asking the impossible but I found the best way to cope was pretend its not happening then deal with it if it does, listen to music, TV, anything. If the worst happens you get a treatment plan and it is awful tbh but at least you start destroying the cancer. I am about 6 months into treatment and all the cancer has gone now. I still have rest of chemo and radio to go but once you know its out that helps. Its rubbish having cancer with kids but there's lots of us in the same boat here and we look after each other and Macmillan also offer counselling and you meet people along the way who stay in touch.

The Maine Coon I used this list www.maine-coon-cat-club.com/kittens/kittens/Kitten%20list.pdf it updates each week or so, they also occasionally have older rescue cats. I used the one in Derbyshire begining with E nice lady though it was pricey via them than the others (£1500) and the kitten on day of collection had an eye injury which we now have to take to vets, she said it happened that day just as we arrived. He is totally adorable but I was not too impressed by eye injury with no prior warning. Madelven was very good and Rydalmaine Coone was good, unfortunately neither had availability. But things like going away, kittens etc really help. How old are your kids?

I have just done chemo 6 today, DH was 1.5 hours late again which I did not cope well with, the oncologist was lovely and popped to see me, another lady gave me some free notepads as I was crying and a lady who had just done chemo offered to stay, lovely of her but told her I was fine as did not want her staying longer. He did same last week and he promised would not do it again.

DD had first day of GCSEs but her brain is just full of Mr Floof. I have had about 10 messages from her about the cat, none about her 2 gcses.

Thank you, I’ll be refreshing that link until I’m ready to take the plunge post surgery!

My oldest DS is also starting his GCSEs this week, and is very cavalier about them, unlike me who has a large handwritten, laminated timetable on my desk of his exam times 😂 I then have twins who are almost 13 and a 5 year old too.

Ive overdone it today, I’ve done the school run and also taken my DS for an eye test and then cooked tea and showered and now I am wiped out. The tummy bloating seems to be coming back today and I’m just feeling a bit horrified that the fluid is building again after only a week.

That’s not very nice of your DH, being late like that. I hope he had a very good reason!