Cancer Support Thread #79 Newbies Welcome

[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

I'm also struggling to eat and only managed a flapjack and a smoothie today.

Does anyone else wonder what they did "wrong" to get cancer? I eat healthily, exercise, don't drink too much, never smoked, am slim and fit. But I have anxiety and have been extremely stressed over the past year. I know it's probably stupid but I keep wondering if I "gave" myself cancer by being so stressed.

Sorry if it that sounds insensitive. I don't "blame" anyone else for having cancer but can't stop wondering if there's anything I did that caused this.

@quinin what lovely news, I am so pleased for you!

@JingleJum I had my diagnosis of OC in December 2020 and still haven't come to terms with it. It still feels as though it is all happening to someone else. I also wonder what I did 'wrong'. I have never smoked, hardly drink, have eaten well, have always been slim and fairly active. I have no family history of any cancer and I have read that most ladies are over 75 at diagnosis, I was mid fifties. I have never been ill with much more than a bad cold before all of this. However I am a very anxious person and wonder if that had something to do with it.

@JingleJum I have BC diagnosed in April this year. I spend a lot of time wondering what I did. I eat well, breastfed both my children, never smoked and I'm only 28.

I also have spent a year between first going to my GP and getting the diagnosis. I was on a Non Urgent Referral because of my age that somehow got lost. From the MRI the consultant seems confident that it hasn't spread any further than the breast. I'm chosing to believe that until I know otherwise. The worry is overwhelming otherwise.

I stop eating when anxious. My DH has got me a lot of milkshakes, soups, porridge etc in. It seems easier to eat that kind of stuff.

@quinin congratulations. That's great news!!

My surgery is scheduled for the 25th May. It's only a few days after my eldest turns 8. I'm trying to focus on planning his birthday but I'm terrified. I really wish I could bury my head in the sand and cancel the whole thing.

Ladies, I'm really sorry to barge in like this but I've been googling and can't find much info so wondering if anyone here has any knowledge of bilateral synchronous DCIS?

My mum recently had a mastectomy for DCIS, during the mastectomy they also removed some of the other breast as pre-op there had been discharge from it but nothing had showed up on the biopsy for that breast.

She's now had results and confirmed that she had DCIS in that breast too (nodes in the mastectomy breast were clear though).They think they removed it all but currently waiting to here if she'll need radio.

Obviously we're concerned as to why it would be happening in both breasts at the same time and what will happen next, both treatment and prognosis wise. 2 weeks until the next clinic appointment so trying to see what I can find out before then 🙏

@JingleJum I could have written your first paragraph about emotions. As an example I was completely composed during appointments I had yesterday talking about the chemo I’m starting next week, in fact I was bordering on jovial all day. Just 5 minutes ago though I burst into tears because I accidentally dropped some Greek yoghurt down the sink when I was draining the liquid off. Something tells me it wasn’t about the yoghurt...

@quinin Great news on your scan.

@Lunificent I hope the water and nap calmed your heart down. I’m supposed to be going for a full cardiac assessment but when I was called about making an appointment, it was the day before chemo started so I shut it down.

@Babamamananarama I really feel for you, your regime sounds extra tough to deal with, I hope you can take some nice food in with you and something easy to watch.

@JingleJum @ChickandLamb Don’t tie yourselves up in knots, you didn’t do anything. We’ve lived through over a year of stress and uncertainty, we’ve tried to keep our families going and be the glue that holds everything together.
I can point to risk factors for my diagnoses, I’ve been on immunosuppressants for years, but there is no certainty that if I hadn’t been on them then I’d have been cancer free.
My advice more than anything is to be kind to yourself.

@Namechange13101 ive just had my third round of EC. First one was ok although I felt very tired. Second one and third evenings after I felt very nauseous but seem to be better this morning. I have been able to continue working to a lesser degree and still walk my dogs every day. My ex and I are currently sharing care of my son 50/50 with me having him more days on the second week where I feel normal. I think it's a very individual experience and depends a lot on existing health and fitness. I have coped but there are good and bad days

@FizzyOrange @JingleJum I'm the same. Never smoked. Never drink much. Healthy weight. Exercise daily but also very anxious all my life and wondered if the stress caused it. Funny how we all have the same thoughts

@MadamBuxton it's never about the yoghurt

@quinin wonderful news about your scan results!
I have wondered what I did wrong. I have occasionally smoked in the past, I do drink but not excessively. I'm not overweight and am active (well, I was more pre Covid), I eat pretty healthily, breastfed for over a year. When my diagnosis was confirmed, the consultant did say it's nothing I've done to cause it, I hadn't even said anything.
I really blubbed at my appointment this week as I was so upset that some of the nodes were positive and that I need chemo. I just want to be out the other side of treatment.

There is a big push in the popular literature these days about all the ways we can combat cancer via lifestyle and attitude. The implication is then that you can also cause cancer by somehow failing in these departments. The catch 22 is that if you accept that you didn't cause it - you can also feel helpless to impact on keeping it at bay in future.

Children get cancer - and that's not through bad lifestyle choices. There are risk factors that seem to tip the balance for some people - that's about as much as you can say about causes outside genetic vulnerability. I've also had thoughts about what I might have got wrong - and what I can do better. It's a tricky balance between not blaming yourself but not feeling helpless either.

I'm wondering about my expectations wrt actually speaking to the oncologist in charge of my care. Since October, we have spoken twice on the phone and met once, after my last chemo cycle. Otherwise it has been a string of different people standing in - including my initial consult with someone I've never seen again (and at the time didn't realise wasn't my actual oncologist).

I was due to talk to my onc on the phone after getting my pathology - but that has been postponed for a further 2 weeks and I will talk to the radiologist in the meantime. My pathology results were given briefly, in passing by my surgeon while they were picking out the glue. To me, this seems like a major milestone that requires a proper, serious conversation.

This generally feels very unsatisfactory but I don't know how this squares with other people's experience.

@Vinorosso74 totally get the disappointment of not being 'done'. Takes a while to absorb these set backs.

@Acinonyx2, that is a good point. I'm trying to stay positive but when you get knocks it's very hard as I'm sure everyone on here is aware. I am going to be an occasional drinker now in an attempt to keep my risk lower and will get my activity levels back up again once I can do.
I would find that unsatisfactory that your surgeon wasn't fully focused giving you the results. Mine has been brilliant around that side of things (I feel bad as at first I would have preferred a female consultant) but he is very good at explaining things, checking my understanding without being patronising and does show empathy. The other two consultants who I have met have both been lovely too and have been fully focused. I'm hoping the oncologists are as good!

Thanks everyone I am delighted with my scan results. My oncologist said it increases my survival which is still crap looking at research but I'm ignoring this.

I'm in a different camp with the cancer cause as really feel I caused mine. I knew instantly it was because of my ongoing unhappiness.

I had been trying to leave my marriage for 2 years. H is a notorious bully and will do anything to get his own way. He was also trying to alienate the DC's from me which didn't work but was upsetting. Work was super stressful especially in the second lockdown. I was under loads of pressure and working stupid hours. A series of good friends moved away so my local support diminished, I was eating crap, sleeping badly due to stress of it all, not exercising as usual. My home was a mess and dilapidated due to general apathy and neglect. My parents are an ongoing nightmare and I had a lot of anger a resentment over loads of stuff. I was also anxious about life in general and lived in fear of god knows what. So pretty shit.

I had been saying to H for a year if we don't move forward I'm going to get ill. Then Boom I was diagnosed with cancer.

The positive has been that I really feel if I caused it, I can undo it. I know this sounds totally mad but this journey has led me down roads I never thought I would go down. I am obsessed with long term survival stories against the odds (prob because mine are crap) and have instinctively following what others have done. The Heal documentary and the Radical remissions book really confirmed what I ready knew so I have been chucking everything I can at this, doing all sorts of mad stuff I would never have entertained before.

I should add that before my diagnosis I was not remotely woo, I am not religious. I'm actually a nurse and have been in the NHS for 20 years. I have have worked in various areas, including oncology, I lived and breathed evidence based practice but I instinctively knew conventional medicine could only take me so far (& the stats confirm this).

I have changed so much in the last ten weeks, decorated my home, friends stay and visit pretty much daily, H has been kind and given my the house equity so I can live mortgage free & has agreed to move by the coast, having therapy, EFT, learnt about Chakras, changed my diet, juice daily, signed up for coaching with MacMillian, seen an integrative doc, bought a bike, meditate daily, prioritise sleep. The list is endless but the biggest change is I feel happier and freer than I have for a longtime and I am v grateful for that.

@Acinonyx2 - that sounds massively unsatisfactory and I would ask to speak to your oncologist before then, but the NHS is under huge amounts of strain so you may not get anywhere unfortunately. Advocate for yourself nonetheless though. Never feel bad about that.

@Vinorosso74 surgeon has been fine - we were both expecting my onc to talk to me further with the bigger picture/details.

I have no doubt at all that people can get cancer despite living the healthiest possible lives they can. But there is also some evidence for risk factors that opens the door - offers some hope - to people wanting to make useful changes.

@quinin I understand where you are coming from and feel a bit the same. I have a background in hard-core empirical science but have wandered across disciplines - I'm also interested in making changes and I think we need to feel there is some hope there. Then it is up to each of us to decide how far to take that.

I also feel, personally, that there may have been a couple of things contributing to my illness which I can try to combat going forward. My prognosis seems to get worse with every milestone - I guess statistically that has to be the case for somebody.

I am going to sound extremely woo here I know. But a few years ago I had a dream that my Grandmother who had died before I was born came to "visit" me and she told me that I was going to get cancer but it would be ok. At the time I put it down to the anxiety of having young children and the worry I wouldn't be there for them growing up. I still don't think it was anything other than my over active imagination but it affected me on some level and I was always really anxious over my health. Every headache was a brain tumour etc. Maybe I got the diagnosis because I was looking for it if that makes sense. Or because I was just so over anxious and stressed. Either way I will hopefully learn to chill out and live in the moment now. It can't hurt and might help.

@Acinonyx2 my pathology results were also delivered in a very unsatisfactory manner. I was relaxing on my bed last week when I had an impromptu call from the surgeon for my 'follow-up'. Including the time it took me to ask her to wait whilst I went down to the sitting room to get my notebook to write it all down, our entire 'consultation' took 2 minutes . I had presumed that my follow up would be a face to face appointment to include an examination but no need for that apparently. I feel rather cross about all of this as I usually like to be prepared for such a meeting with my questions written down. Maybe this is her way of keeping her consultations as brief as possible?

@ChickandLamb I have always been terrified of getting cancer and wonder if I was looking for it. I was having CBT for health anxiety last summer. My homework consisted of having to fill in sheets with alternative ways of thinking to retrain myself to think I didn't have cancer. Oh the irony.

@Acinonyx2 This was my experience through the last year where I was getting a phone consult every two months, by different people (and if someone can explain who and what the registrar does that would be great), always two hours late and always for less than five minutes. Meanwhile it was apparently ok for me to trundle in on the Tube for 45 minutes to get my bloods done two days in advance and then linger around for someone to do my injections. I felt completely hung out to dry and went private in November and have spoken to the same MO in person every month since, the process is more streamlined and I feel far more reassured with my care and that there is a bit more latitude in decision making.

That being said, I just had my ooph privately and there was a time change that was not communicated and absolutely zero aftercare. Not even a take home pamphlet on like what to do with wound care or a nurse check in a few days after. I'd like to start exercising but when? Is it safe?

@ChickandLamb My mother was extremely anxious when we were growing up that we would get a childhood cancer. I have no idea why but she fixated on that for a good ten or fifteen years. I was diagnosed (breast) in September of 2019, my brother was diagnosed (head and neck) in February 2020 - so she was "right" in a way, just 30 years early.

I never had health anxiety but I had plenty of stressful times in my life. I also had an unknown BRCA mutation that would have remained hidden had new oncologist not asked for the test (NHS would never have offered it as I have no known family history of cancer). You can drive yourself nuts wondering why you or what you did, but it doesn't change what happened. It can, however, help support your outcomes after.

quinin that is an incredible set of life changes, so impressive. It must feel really good on a fundamental level to have taken control of your life in such positive ways.

When I was first diagnosed I had all sorts of revelations and was going to use this time to do all sorts of creative projects but the reality is that most of the time I'm just too knackered. But I do intend to put my health, body and fitness as a number 1 priority going forward as they have been languishing low down the list for a long time.

No one knows what causes lymphoma so I'm not blaming myself for it - I don't need the extra emotional weight of castigating myself and wondering why. I've lived a fairly 'exciting' life at times and smoked for years in my youth, but apparently not a contributing factor.
I do feel like there was some foreshadowing of my illness though. I had 3am strange instincts that there was something growing in the left side of my chest for months and months before I had symptoms.

A quick question: does anyone have any idea when visitors might be allowed again in cancer wards?

I also have anxiety and had a course of CBT during the time I was worrying about my symptoms. I had a painful lumpy breast but mammogram was normal and ultrasound just showed benign cysts. The CBT therapist spent so much time and effort trying to convince me that there was no need to worry and it was all in my head, and that it was the anxiety tricking me into thinking there was something wrong.

I'm glad the CBT didn't work as I was still so anxious about it I decided I had to go back and get it looked at again. And it was only because of the anxiety that they did a biopsy to reassure me and found the cancer.

I'm still coming to terms with my very recent diagnosis but I'm not sure how this is going to affect my anxiety going forwards. How can I ever trust a "normal" scan now? My anxiety may have saved my life. Now every time I have a health concern I expect I'm going to be convinced that it is the worst case scenario.

I'm also wondering how the stress of the last year may have contributed to this. Homeschooling, working, housework, kids' exams etc on top of the general pandemic worry was really stressful. I put a lot of pressure on myself to keep up my standards at work even while homeschooling and was on the go all the time. My usual ways of destressing, like going to the gym, seeing friends etc weren't available. My manager at work doesn't exactly have a strong work ethic so I always end up picking up the slack and feeling like I'm doing a lot of her job as well as my own. And there was no appreciation for how hard I was working, no concern ever shown about how I was coping with work/homeschooling even though I am the only one in my team with children. DH was shut in his office all day so everything was down to me. I wonder if the pressure was just too much for my body. But not sure how I could have done anything differently, other than resign from my job but we really need my income.

Jimjam oh that's so difficult. I was also initially told by my GP (without a physical examination) that the sensations in my chest were quite possibly anxiety. Errr, no it's a massive 18cm x 10cm tumour squashing my windpipe, heart and lungs! Such a difficult thing to trust your instincts when you have to balance them against a tendency towards worst-case-scenarioism (I'm prone to the same). In this case my worst case scenarioism was warranted.

@JingleJum it's so difficult isn't it? My diagnosis was also missed for a long time. I think going forward I'm going to try my best to trust my own instincts and advocate for myself whilst not letting myself spiral over every ache/pain or bump.

I too have been wondering whether my anxiety has contributed to my cancer. I asked DH this question last week. His response was ‘utter tosh’. My friends are shocked (as they self reflect) as I am seen as the healthy one amongst us.

DF has Alzheimer’s and has had an active mind and body accompanied by an exemplary diet. Physically he has been in amazing shape. It has made no difference to his outcome.

I distinctly remember my first anxiety attack aged 11 and have had varying degrees of it ever since then. I have never seen a professional about it or taken meds. Over the years I have learnt techniques to self calm and try and manage it. Generally keeping very busy has always helped. Lockdown threw this out of the window.

I found this latest lockdown particularly tough. We had a lot of family unrest, DF almost died and DH was away for months. I said to him in January that until I properly sorted my anxiety out I wouldn’t be able to really achieve what I want to achieve. I have become so good at hiding it only a couple of close friends know.

Starting at the beginning to address this seems a massive task at the moment. I was referred to one counsellor a couple of weeks ago but he was about 28 and I just couldn’t gel with him. Perfectly ‘nice’ and qualified but I found myself turning the questions to him. They have referred me to someone else. Where to begin? What should I expect the experience of counselling to be like? I think I’m struggling to see what ‘good’ will look like and whether I am personally able to be 100% honest rather than hide behind my usual facade. I can imagine that the process could be quite tough.

@quinin - I admire what you have changed and it seems a lot! What did you start with?

@Babamamananarama - my hospital said they are not letting anyone in (although you can take someone for results) for the foreseeable future. Your regime sounds really tough and I wish you well for the next round.

@Acinonyx2 - I would definitely push for an appointment in the vein of ‘he who shouts the loudest’

@MrsPnut - just finished the midnight library and really enjoyed it. Thank you.

Those who've had surgery recently, did you have to self-isolate beforehand? I've been told I have to for two weeks before mastectomy and one after - seems a bit Draconian

Also been told my drain will be removed the day after before discharge - which is good but makes me worry seroma will be more likely.

@HauntedDishcloth I was told to social distance for 2 weeks before which meant I could't work as we couldn't be less than 2 metres apart and then self isolate in the home for the last three days after a covid test, I wasn't told to do anything afterwards. Have a look on the website for your hospital trust.
My operation was on the Monday and the drain came out on the Friday, my surgeon was happy for it to come out if the amount was under 100ml which it was the whole time.