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

Morphine was for hemi-colectomy. No complaints about local hospital for colo-rectal surgery. It's only Gynae that seems to have a divide between Ob-Gyn, basically babies and plumbing, and cancer. Ime, Ob-Gyn consultants tend to have qualified 20 years ago and not be up to date in recent cancer research.

Not heard from Top but am sure she is doing something more adventurous than still being in bed at 12.40pm like me Thyme I have not been inspired to use a lawn mower either though its one thing I am trying to inspire DH to use but he's not been convinced. Need to finish sorting house soon its better than it was but got a cleaner coming in on 30th April for 5 hours as a one off to do downstairs, upstairs is OK, well as long as you don't open 16 year old DDs room but we aren't allowed to do that anyway and best not to. Though when we went to Wales and she stayed here we got a message I never expected to receive from a teenager, you are not allowed to use the outside recycling bin as I have filled it until its collected. Must have got very bored. I said to DH maybe next time we could go away a little longer and the whole house may be done. She did not even leave washing up mountain like last time.

PICC line come through for Monday which is good so I can pretend its not happening this week but Monday chemo is at 12 and its at 9am so not sure if that will be too close. Having said that it tends to be quite a bit of waiting before they start chemo as short of nurses. Well at least PICC will be done and the 2 together work for us though DH will drop off and come back both times. Long day for me. Do people with PICCs do the flush themselves or is that more hospital appointments. Hope not, I watched a video and think could do that my self, it was on Royal Marsden website.

Actually Top seems to be updating on her page, seems like cleaning all morning and trip to Gosport this afternoon. You can follow the page. www.facebook.com/BBBBBB2022

This afternoon I will be remaining in bed as a piriton zombie. Activities today have included MN, kids back to school including DS finally changing his shoes after buying them in September as he needed the others destroyed first as he hates wasting money and he has definitely achieved that, ordering some chemo caps, eating yoghurt and now a salad. Don't think I can justify a FB page on that excitement level but glad some of us are up to it. Gives hope for the future.

@mowly77 My nausea & vomiting on FEC was resistant to everything mentioned on the thread recently and including diazepam. I did have some success with travel sickness patches called Scopoderm but I think that was more to moving on the second part of my chemo regime and not being as sensitive to that next lot of poison. The patches were prescribed for me but I believe you can get them over the counter.

I am still testing positive for covid on PCRs since coming down with it first on March 12th so I'm having to have my Herceptin treatment in a special ward where we're treated as if we are highly infectious, like lepers!

Not having much joy trying to find mastectomy swimwear - the manufacturers seem to assume people who need it don't need any support on the other side if they've had a unilateral one. Might have to get the needle & thread out.

Very impressed with Top's plans. Hope she gets on the TV again.

I just got my swimsuit from Asda / George, very cheap, I do size up with swimming costumes over clothes and am not that big for chest so not sure how support would be if bigger but fine for me, padding on both sides and pockets in breasts. Not sure there was support as such. Though sewing in pockets may be way to go if you have something suitable without pockets. I also bought a rash vest from Boden, just to cover up more though not tried that yet.

direct.asda.com/george/women/swimwear/pink-post-surgery-belted-swimsuit/GEM900028,default,pd.html?cgid=D1M1G20C15

Thanks @Thymeout - my referral was to gynaecology oncology but I forgot to ask again today. There is a cancer centre at the hospital though I was just in gynae today. I didn't find out anything new but I did have a chest X-ray, so more waiting for results, though at 1a1 from the scans I'd be pretty unlucky if it had spread further. Also looks like another week wait for a date. Anyway, one more anxiety-provoking appointment over! The consultant also told me that "everyone" is getting cancer these days when I was saying I didn't think I had any obvious risks, it's a bit scary.

Was doing fine on olaparib until Sunday and its like a bomb went off in my gastro tract. Insane acid reflux pain, nausea and loose stools the last two nights after dinner. I keep chucking pills down hoping some combo will eventually stop the spasms either at the top or bottom. Called my BCN this morning and they advised some gaviscon on top of everything else and call back in two days if its still bad. I can barely eat anything on the BRAT diet right now and I was already having appetite suppressant problems.

Supposed to go to Italy next week for four days and if I can't get this under control we may just have to delay. Why go if you can't eat?!

Really hoping this is either drug adjustment time or partly due to maybe overdoing it on the spin bike Sunday, but its miserable.

Thanks @Silkierabbit I will need a bit of scaffolding on the non-pocket side as I'm F/G cup, otherwise the prosthesis will be nice & perky and my natural side will be down by my waist Well, not quite but definitely heading south!

Thank you for the birthday wishes. DD tested negative so back to nursery, hooray! I actually left the house for the first time in weeks with a friend and we sat by the sea for a bit and then had lunch which was a huge result. My sister amazingly rallied from her covid and made dinner and a cake too. I spoke to my oncologist and if my bloods are good enough it’s picc line in and then first chemo on Friday. I’ve been waiting so long for this but it’s also so nerve wracking and awful at the same time. I’m really scared frankly.

@mowly77 Wishing you strength and an easy time, it’s almost worse when you’ve done it before because you know what’s coming.

I started radiotherapy yesterday and in true you couldn’t make it up fashion, the machine broke down with me on it. I was there for 2 hours in the end and was thoroughly fed up with holding my breath for the arcs. I needed a drink and the loo, had indigestion and an itchy eye then to top it all off my shoulder and back were killing me. I’ll be back to do it again later.
I’ve also an appointment to have my port removed on Friday, just before a very busy weekend but hopefully my chest might start healing after it is gone.

Top checking in from Portsmouth. In true Mumsnet style my DH took me up the Spinnaker Tower. We are having a sightseeing day after three days bashing into the wind along the South Coast. Off again tomorrow.
Sending strength to @mowly77 and hoping the port comes out @MrsPnut . I can’t believe your bad luck.
love to all. I’m off to see some old ships which is my idea of heaven!!
Top xx

Top checking in from Portsmouth. In true Mumsnet style my DH took me up the Spinnaker Tower.

On a Tuesday?

Oops I have posted a pic of me sideways and I can’t correct it - never mind.

Hope you can get to Italy Herbal I had a bit of a delicate stomach when went to Wales was lucky were car got stuck there was a toilet as the meds were not solving it but decided to go anyway and glad I did as I wanted to do some living inbetween chemo sessions but depends how bad it is I guess. I think a lot of people have the 1 pert new breast, going south other one issue, hope you can find some support.

Mycat Glad your operation is done, sorry your husband was an idiot, I hope in time you can find someone who treats you much better and you and the cat both look pretty. Glad the cat is more use than the husband. And please continue to say exactly how you feel, that is what we are here for to look after each other.

I am glad you got out on your birthday Mowly

I got my first instalment of ESA today, 15 weeks at basic rate so £1100 which was great as means I remembered my bank number on steroids OK and the money covers all additional costs to date and will pay for a cleaner for 5 hours as a one off on 30th. DH has appointed himself head of cleaning whilst I am on chemo but his idea of clean is very different to mine and things like 28 toilet rolls empty appear stuffed in radiators and rubbish just gets relocated where he thinks I won't see it and the floors and downstairs toilet. 🙀Tbf he is doing a lot but he really does not see the issue says I am just being ocd. I wish I was!

PICC line now needed and have on Monday pre chemo then chemo at 12pm. Bone scan also come through. Have to try and get change of schools for year 10 DS asap so trying to sort that whilst a chemo zombie this week. Have ordered things in for cleaning and for chemo and doing it and 28 page ESA form so doing a bit. At least flushes will be on chemo days so just one hospital visit a week. DD is doing well and GCSEs start 26th April then break to 16th May then 33 in a row as she is taking 12 GCSEs and 1 AS level.

Top Your adventure looks amazing. I love boat trips.

Sorry you have more issues MrsPNut and hope it is all over soon.

Love to everyone.

Sorry have Herbal and Haunted a bit mixed there.

@Silkierabbit You only need to complete the page declaring you have cancer and get the chemo nurse to sign it so that will save you a job.

@Mycatispretty There was a recent article about dating whilst having cancer which looked really interesting.

Today’s radiotherapy only took an hour, an improvement on yesterday. I need bloods too tomorrow ready for the port eviction, I also need to add to my dressing stash ready for afterwards.

Thanks MrsPNut I also put anxiety on my initial claim for so I need to fill in the whole lot but am half way through. I did it all on paper before but forgot to do in caps and need a record of it so redoing on computer. Someone has just told me no assessment if on chemo in guidance so that will be good though I have a work assessment on 9th June booked though that is just over phone and lady was lovely so not too much of an issue. Just severly lacking in energy atm and have to get DS into a new school and DDs GCSEs as well as chemo, picc and bone scan but at least can afford not to work through this but glad to have a bit of ESA income. Interesting your chemo nurse signed, was going to try GP as chemo nurses are running round on 12 hour days at the hospital and quite a few are quitting. AFAIK form has not arrived yet though rabbit is very keen on eating post and a 28 page form would be excellent for him and DH also takes post and leaves it in various places and then forgets.

@Mycatispretty Glad the surgery is over and you're home. I'm single too since DDs dad decided that behaving like a student forever was better than being a responsible parent (though maybe that's insulting to students!) I have sometimes felt a bit sorry for myself having to ask friends to do things for me. It's also difficult financially as I'm self-employed and no one else's wages to rely on. I have a couple of cats - it's going to be a bit of a challenge though to stop them jumping on my stomach after my hysterectomy.

@Silkierabbit But you automatically get put in the support group on the cancer diagnosis so why waste energy but it’s your choice.
I got ESA to top up my income protection insurance to 85% of my wages, I wouldn’t have claimed unless the insurer hadn’t told me to.

Yes it may be a waste of time tbh but initially was advised by ESA wrongly I suspect would not automatically be in support group due to chemo but someone showed me the guidance on another thread and that is wrong from what I can see. I think you may be able to stay in support group for longer with other issues but will see, I am not sure I have enough though may get mobility issues from neuropathy. Though am just happy to have some money as not working at the moment and was self-employed. I used to work in London earning a lot with private medical insurance but since moved to a village and self employed its very little and largely to keep mind busy interesting work still like working with economics advisers to Australian government but pay is poor and work sporadic though not too much of an issue with that.

Hopefully I will get support group as then another £500 or so back pay and that's half an maine coon cat I want. Hopefully the front half.

Yes do get the front half @Silkierabbit although the back half would have a very nice tail I expect.

Got a note from DD’s nursery today to say Gilbert the Guinea Pig has died and they were doing a special storytime about it. Oh good I thought. Maybe that’ll help when I have to explain my impeding death to DD. 😐

First pax tomorrow. They can’t put a picc line in before apparently for what reason I do not know. Maybe because I still have a faint positive on my covid test. So I’m bricking it for many, many reasons but mainly the thought of another fucking cannula. I’ve done loads & loads today in a last ditch attempt to outrun chemo I guess. Gardening. Laundry. Cooking. Things I haven’t done for months.

DP had an Asperger’s meltdown in the car on the way back from hospital and shouted & swore at me extensively & then locked himself in his room for the rest of the day. He’s just emerged but he can fuck off to the far side of fuck and stay there.

Happy days.

Cannulas truly truly suck and I swear nothing makes you feel like a cancer patient faster than having one of those stuck into you.

Still fighting the indigestion pain here, though I think we may be on the other side. They've paused my drugs so my stomach can have a bit of a break. Gaviscon is the devils own liquid, good lord is that disgusting. Went back to basics today with baking soda in water. Had a little bit more to eat, am sitting up focusing on things much better, so hoping hoping hoping in a few days Ill be feel more like myself again.

So sorry about your DP Mowly My DH got like that just before chemo started, suspect he's is asd as well and its the last thing you need when your own anxiety is through the roof. Mine has improved as chemo has gone on, think he gets scared and rants, now he has been redirected onto taking over cleaning, (very badly), cooking and shopping and seems better with a purpose. Hope your DP settles down soon and supports you as must be so tough for you at the moment. Feel free to message me anytime.

Hope the Pax goes OK tomorrow. I have PICC and Pax on Monday, a fun all day hospital trip, dread to think how I will be by end of that one I am zombie like already, piriton they give me sent me under for a minute last time and will have some kind of anaesthetic on top. Nervous about getting a blood clot on it but not much choice really.

Had my counselling today, she is lovely but was so tired and could barely stay awake for it. Got so much to do next couple of weeks and hospital appointments are coming in left, right and centre, its good not to be forgotten but feel like I should move in. Its 2 next week then 3 week after and DDs GCSEs start and have to move DS schools, at least I filled in my bit of ESA form last night but now we have to sort house as well for cleaner and PICC line. I also will need to wait for Maine Coone kitten due to PICC as she would bash it I bet, sensible but I like to dream of a fluffy cuddly thing on my bed.

Love to everyone.

Picc and pax both done today. Weirdly happy and energetic but er I have taken quite the cocktail of drugs to get me through it. And you know I think the lead up is the worst thing …

I do expect the side effects to kick in over the next few days … but hey ho.

Love and support to all and happy weekends.