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

Lovely to hear from you MissSmiley but very sorry to hear you cannot eat. I really hope they can solve that for you and quickly. Please do not worry about replying to anyone, you are going through so much and must be so weak not eating, just concentrate on recovering.

Hope they can find a solution MrsPNut

Knitted You do feel different after surgery, I had one breast removed and not reconstructed though am just so glad cancer is out that I don't care too much how it looks though helps DH does not care either.

Hope radiation goes OK Herbal and the end is in sight. I also have visions of me collapsed like when Olaf collapses into pieces with all the treatment programme but sure they know what they are doing. I find here is something to cover you up then next minute you have to show them everything a bit pointless. And whenever I choose clothes now its a bit sad as my first criteria is how quickly could I undo my top in this for the breast clinic

NikNak Yes daily exercise is good, if you have long covid may need to build up very slowly to 20 mins a day, maybe start at 5 mins or 10 mins but does not need to be massively energetic exercising, anything helps though think the mental health effect comes in at 20 mins. I had ME before this after previously being superfit and it was very hard though cancer gave me the kick to push through it and it does help me both physically and mentally.

Hope you are recovering / better TooNoisy

Hope the painting and exercise classes are going well Top

Love to everyone else. Not much happening here, just waiting for 28th for prosigna results, both kids back at school, gcses coming up for eldest. The silkie is proudly laying eggs very loudly with rabbit watching over her like a protective father. Cat is giving them both withering looks, she is much older and not impressed with their energy levels.

Sending very good wishes@MissSmiley . Thinking of you🌺🌺
Lovely to hear about the chicken and rabbit! @Silkierabbit
Thinking of everyone waiting on results/ appts/ healing. It’s so hard when the path isn’t clear and constant spanner’s being thrown in the works.
Just done chemo 3 of three- now a couple of weeks before weekly which will last another 9…… but there’s a path, so far so good.
Thank you for all the support on here. A special place.

@MissSmiley

I had an nj tube, too! And a clutch of students to admire it. It was the result of an unexpected diversion during my hemicolectomy, when an eagle-eyed surgeon spotted a GIST in my jejunum while doing something to my small bowel. Fortunately small enough to be removed without too much bother.

It caused a bit of a drama one night when I woke up in a haze of morphine and got it mixed up in my mind with the oxygen tubes which I’d thought was my glasses and unhooked from my ears. (I HATE morphine!) I remember hearing a panicky conversation between the nurses about whether to phone the consultant at home or not. Too scary to contemplate apparently. But I was taken down to CT next day just in case. Have no memory of that at all. Btw, when a VIP nurse removed it, it didn’t hurt at all.

Are you hungry? I had 6 days on water and later those sickly meal replacement drinks, but didn’t miss food at all. Appetite only returned when they let me go home.

But I guess you’ll be missing the top half of your digestive system more than I miss the lower end which is just basic plumbing.

Fingers crossed they’ll let you out soon.

@MissSmiley glad you are getting better.

@Thymeout I hate morphine, too. Gave me most awful trips, just horrible. Staff in hospital presented it to me as something great but no, it wasn’t.

Phone re: CT scan results, apparently they are not in yet. I also told the BC nurse about the throbbing sensation in my lower buttocks/upper thighs (back of legs) with muscle twitching which I thought may have been due to Covid but now that I am Covid free I am beginning to freak out. It’s there, then goes away for a few days. Then comes back again. Why, why, why????? It seems there isn’t a day when I am not going out of my mind about something or other connected to bloody cancer.

Voltarol gel helps, gentle yoga helps. Is it bones? Is it joints? Is it muscles? Apparently either my surgeon or oncologist will give me a ring next week.

And I NEED to stop googling. It sends me over the edge.

@Thymeout I feel honoured that we have a shared history with GISTS. What was your original op for?
Malnutrition is the main problem afterwards and diarrhoea and vomiting.
I'm refusing the NJ feeds, they're disgusting and I'm not hungry in the slightest. Water is as much as I can manage at the moment.

@MissSmiley

I had a tumour in my transverse colon. (Picked up by routine monitoring CT scan for ovarian tumour 5 years earlier. One of those weird ones that are non-invasive, non-malignant, but have a v small chance of turning into the Real Thing further along the line). No symptoms.

They removed the ascending colon and most of the transverse and then did some fancy tailoring joining the remaining colon to the lower end of the intestines. Seems to be working OK. Have to make sure I eat enough fibre. High end of Stage 2, so had oral chemo, but only 4 out of 6 because of covid.

I'm at a different stage of life from most of you, which makes it easier in many ways. Little ones now middle-aged. If cancer comes back, I shall console myself with the thought I won't have to endure 5 years of dementia like my poor mother.

@balkanscot
Yes - hate any sort of mind-altering substance. They don't seem to work on me. Even alcohol. I'm under the table long before I feel like dancing on it. Nicotine would be my drug of choice and that's getting nearly as difficult to get hold of as heroin - certainly in a hospital.

I am really freaking out this morning - no pain at the moment but it was quite uncomfortable last night and didn’t completely disappear after the ibuprofen gel. DH woke me up with his snoring as usual at 2 am and could feel a slight tinge then. Which totally unnerved me (“pain at night” paragraph on all cancer websites). Then made a mistake of reading secondaries patient stories on Breast Cancer Now website. Which resulted in self-diagnosis of bone mets.

I feel unable to wait until next week when they said my surgeon will phone me.

And I understand my DH has had enough of me always freaking out regarding any pain/niggle, but he said something along the lines “You simply cannot accept that you are cured now.” CURED!!’ He has no idea!!!

Sorry for the incoherent ranting. I keep using Headspace and doing some light yoga (which does help a bit) but it seems it has not helped me to zone out completely, only when I am doing it.

@balkanscot Oh my love, I really feel for you. It's a really horrible feeling and I do know what you mean. I've damaged my arm, probably the muscle/tendons rather than the bone as it hurst much more when I try to grip something and my mind immediately went to an infection that was spreading from my open hole rather than the more likely explanation of me doing DD's paper round a few weeks ago (which is when it first started hurting) and haven't been able to stop using my arm long enough for it to heal.

@MissSmiley I hope your scan went well and you can begin eating soon. I'm presuming they won't let you home until they are happy you are eating and it is transiting normally.

I managed to test positive for covid on Tuesday night, I felt sniffly and thought I would test before bed expecting it to be negative. I'm the only one affected though and everyone else is daily testing. DD2 so she can go to school. DH because he is going to see his mum in her care home tomorrow and DD1 because she is at work with vulnerable adults.
It's like I have a cold and up to 2 years ago would probably have just worked from home with it and not thought anything more. Now, I am confined to barracks and that is driving me crazy.

In better news, the sun is shining and the wind is blowing so I have bed linen drying on the line.

@MrsPnut I hope Covid is kind to you and that you don’t feel too rough. I felt like climbing the walls towards the end. It has been a fine morning here as well, finally, after all this wind, rain & snow. Went to the park, sat on a bench with my coffee and practiced keeping myself together for the weekend. At the moment I feel like I am a crap mum and a crap wife with my mind focused on one and one thing only. So far no pain this morning but I am on such high state of alert, just waiting for it to start later on in the day. Bloody exhausting, mentally.

Morning everyone

I've lost a stone in weight over the last week. Came in at 11st, now 10st exactly. Hardly surprising really considering I can't eat and even the tiny things I do eat or drink like yoghurt or juice get aspirated out of my stomach via a big syringe.
I can't eat because my new bowel that is attached to my stomach is asleep, surgeon said this morning is a rare complication but usually resolves itself within a couple of weeks, we're at the two week mark now. It means I have no idea when I might go home.
I did however poo for the first time since before my operation this morning! That's to be celebrated I think. 💩 🎉

@MissSmiley that is an incredible amount of weight to lose in a week, that will not be making you feel well at all. I hope your new bowel does the decent thing and wakes up soon.

I am wondering if anyone can advise me.
I feel awful, completely drained and weak, dizzy if I stand or even sit upright for any length of time. Not actual fainting dizzy, but unable to remain standing without support. It’s 10 days since my last chemo, and usually I would be feeling better by now, or at least not this weak. I am eating a bit, not loads, but am drinking plenty, juice and milk and fizzy water. I have a rubbish headache which won’t shift.
Is this just normal after 4 rounds of chemo (only 2 weeks apart) and should I just accept it and stay in bed, or is it better to try and get some fresh air, or do some little jobs etc?
I don’t feel sick no other aches and pains.
I also know it’s nothing compared to what others are feeling right now, so sorry if this seems a bit of a whiney post.

@Podgedodge I would want to check your BP and maybe blood sugar levels, do you have a home machine to do blood pressure? You might not be eating enough and that might be making you feel weak. Bizarrely I have felt much better this week, but I've barely been out of bed in the last two weeks. How helpful if your GP? Mine would probably pop out and have a look at me in your circumstances but they are generally amazing x

@Podgedodge You should have a 24hr chemo helpline to ring so if you have, ring them. Also, what is your temperature? Any sign of fever should be investigated. I have had times feeling like that but I'm very good at resting & wanted to avoid having to go into hospital so I just stayed put. Your body is telling you to rest so don't make yourself do things.

Those who have had 5 sessions of breast rads - what is the fatigue level on that? If this stupid tube strike goes ahead this week its going to be exhausting to get to/from radiation on at least two of those days. Of course this is also the week with work deadlines.

I did ok with the vertebrae rads, but was quite tired by Thursday and had to nap, which helped, along with taking walks at night.

Hope you don't mind me posting again.
Just a quick question.
This time last year I'd just had my second operation.
In November I had my first mammogram after my radiotherapy.
All clear.
My breast care nurse told me I will be seeing a consultant or surgeon.
Is this the norm.
Do I need to contact my nurse.
It is now 14 months since my first operation

@MissSmiley

Congratulations! It's a big deal! I felt like a toddler who'd just done her first poo in a potty instead of pants. I practically blushed with pride when the nurse said how pleased Mr Big Shot consultant would be.

Bowels are notoriously sensitive and sulk when interfered with, as anyone who has had a vertical incision TAH will confirm. The pain from trapped wind was much worse than the incision.

Don't recall weight loss because my abdomen was so swollen and lumpy I needed pj bottoms for a time even when I got home. But I do remember my consultant pinching my thigh as if he was choosing a chicken in the butcher's and saying he didn't want me to lose any more weight.

@HerbalRefreshment I didn't feel tired at all on the five day radiation just a bit swollen and a sunburn feeling. I was able to drive myself and they had a designated parking area so no stress there. Years ago my mum had the three week routine and she found it tiring but she had had chemo first.

Hello all, first time poster on this thread.
I was diagnosed with cervical cancer on 2nd Feb after a biopsy in late January. I had a MRI on 10th Feb and met the consultant on 18th, they had phoned on the 16th but would not discuss anything over the phone.
The consultant said it is stage 2 or 3, so I've got a PET scan on Thursday.
I went into hospital last week for pain management, it was fantastic,
I've been in pain since September last year and on various painkillers which did help but not for long enough.
The Consultant is talking about both Chemo and Radiotherapy starting for 5 days a week at the Beatson in Glasgow.
You all seem so supportive and helpful on this thread, I hope you don't mind me joining and asking questions and maybe being able to answer some for you all further down the line.

@catzrulz welcome to the thread nobody wants to join (we should trademark this line). It seems that the plan of action is coming together which is the main thing - the worst is not knowing and then speculating/extrapolating all sorts of scenarios. Glad to hear that pain management is working, too. Please do ask anything, there will be people on here that have experience of OC - I can talk about BC only as my ovaries were taken out as a precautionary measure due to BRCA2 gene.

I have started writing down every time I feel a niggle/ache in upper legs/lower hip area. It seems to be switching sides and is never bad enough to take a painkiller for. I have relaxed a little bit with a Doris Dayesque “what will be, will be.” I always wake up fine, as though the night and rest helps.

Have a lovely Sunday everyone - the sun is out which is a cause for celebration because most of February was 🌬💨 And a write off due to 3 lots of Covid in the house.

Welcome @catzrulz, ask away. I was diagnosed with vaginal cancer in November 20 and then had a CT scan which showed I had breast cancer as well.

I had 25 lots of radiotherapy with weekly cisplatin followed by 3 lots of brachytherapy - the treatment for vaginal and cervical cancer is the same pretty much. It's very tiring but it's over pretty quickly, compared to my breast cancer treatment which is still ongoing.

@balkanscot Definitely need to trademark that phrase. I have been enjoying the sunshine, and have washed everything that hasn't moved over the last few days to get it dried on the line.

I'm having to miss a rugby match this afternoon that DD's team were invited to specially, we were given 100 tickets as a section but I'm still testing positive so stuck here.

Hi, how’s everyone doing today? I’m feeling a bit low today, I have my 2nd EC chemo on Thursday, and although my oncologist is reducing the dose by 20% and changing my follow up injections, I’m still dreading it as I was so very poorly after the last one. Really only just feeling back to normal - just in time for the next one!
Also struggling a bit emotionally. Feeling very worried about the impact the cancer is having on my kids, my relationship, my family…also feeling very concerned about the future and the fact that cancer is always going to be in my life what with check ups etc and on my mind, frightened of recurrence and panicking about every little twinge. Sorry for moaning. Just a bit of a low day today ☹️

Sending love to you all xx

Big unmumsnetty hugs @TwoBigNoisyBoys, I hear you loud and clear. I hope the drugs they give this time work better on your side effects, I had emend anti sickness and pegfilgrastim injections for my chemo and I was pretty much OK whilst I had FEC but feeling ill is dreadful when you know you can't avoid it.

I'm fed up of being in the house, and fed up of being in Cancerland. I want to leave but the exit door seems to keep moving down the hallway. I see my oncologist again in 2 weeks to make a decision about radiotherapy, and am due to go to Seville in 4 weeks. I've already told my oncologist that I am getting on that plane no matter what happens, I need some sunshine and tapas.

Sorry you are feeling low and scared TwoNoisyBoys

Hope you are continuing to recover and progress improves MissSmiley

I was supposed to get prosigna results back today to see if doing chemo which I am a nervous wreck about (largely just sleeping since Edinburgh trip) and call today to say cancelled as no results back and postponed a week. Not great though was very anxious today having asked online and got very negative responses about if result says no chemo saying basically should do it anyway even if oncologist does not recommend otherwise will die and will be my fault and pointing out friends that have died. My oncologist did say before to ignore this but end up feeling damned everyway and the threat of nuclear war is not helping anxiety levels esp when advice is stay home and live in thatched cottage, plus I would want to get the silkie, rabbit and cat out and that will be my 12 mins gone

Lovely former Italian flatmate from 20 odd years is video chatting me tonight which will be lovely and hopefully distract me. DD starts mocks round 2 for gcses tomorrow and had a call today to say DS had gone missing from school. But DS is asd and very predictable and I knew he would be home in 10 mins and he was.

Hope everyone else is OK.

@catzrulz welcome, sorry to hear about your diagnosis, pain management sounds good though, will you have to stay in for them to keep on top of that?

@Silkierabbit big hugs to you

I'm reading everything else but still not feeling very well, I'm losing weight rapidly now, I haven't really eaten anything for two weeks now, so I will reluctantly allow them to tube feed me tonight :-(