Cancer Support thread #78 - 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

@Alittlewornout I am so glad you have had the relative good news of treatment as an outpatient. We have to take the small gains where we can.
I have had a bit of excitement here. Breast Cancer Now is running a campaign to find the 11000 women with undiagnosed breast cancer since mammograms were postponed during lockdown. I was interviewed as someone whose diagnosis was delayed after I missed my mammogram but luckily for me (!) found a lump and started treatment three months after I would have been diagnosed by the mammogram. The Daily Telegraph have rung and want to feature me. They wanted to send a photographer to Top of the Cliff Towers but that seems to me to be breaking lockdown and shielding rules so I said no. I am doing it because it is a very worthwhile campaign to get the government to invest in catching up screening and a publicity drive. I also got a chance to explain that GP surgeries are open for business and want patients to come forward with lumps and other possible cancer symptoms. The journalist wanted to know how did it feel and what was chemo like etc. They are ringing again for more information. If anyone has any thoughts on what I should say I would be grateful. I don’t want to make it sound too awful but actually it is! It certainly livens up a dull Monday. Trying to be good and not use my arm!
Top

@Alittlewornout that is good news though. Chemo regimes vary a lot as do responses - so be prepared but don't necessarily assume you will be really unwell. Your dr probably has a better idea about that for your particular treatment.

@TopOfTheCliff Oh excitement. I admit to being a bit of a media tart when I get the chance . My mammogram was delayed 6 months due to covid and can't help but think I might have been stage 2 rather than stage 3 but hey ho - it is what it is. Sorry we won't get to see a photo!

@Acinonyx2 the journalist asked me if I knew of anyone that had happened to. For me I was lucky that it hadn’t spread outside my sentinel node AFAIK. But there must be women out there needing treatment now who don’t know they have cancer. It’s a worthwhile campaign.
I sent them some photos. One of me in my pyjamas and one of me cycling to chemo. But if she calls me brave I will swear at her!

@TopOfTheCliff that is an exciting morning! So pleased this issue will be highlighted, its something myself and nurse friends discussed at length during 2020. You are right it is awful that peoples outcomes may have been very different if screening had been ongoing last spring/ summer.

That's a depressing number of women that could be needing treatment I wasn't in the screening programme but I do wonder if the situation meant I didn't notice the lump earlier - I had a routine of checking weekly after my first gym session of the week but that went out the window. I vaguely recall thinking I needed to set a monthly reminder but never did & kept expecting to get back to normal so I was just checking on an ad-hoc basis when I remembered. My own fault but I'm very routine-driven for my MH; even things like school holidays can challenge me. Anyway, I guess this also applies to cervical screening How will the NHS ever catch up?

Happy International Woman's Day to all you brilliant women.
Can I ask how you deal with the emotion rollercoaster? I'm literally up and down. One moment I can see passed the treatment to starting life again and the next moment I'm floored by the sense of loss and despair and fear.

@BadEyeBri I tried ( sometimes successful sometimes not) to go with the ups and downs they are natural and your body will tell you what it needs ie more rest one day and more activity on another.
I think it's easier to try not to think too far ahead. During treatment I just thought about the next stage. The next blood test.the next chemo,surgery,recovery from surgery and finishing chemo.I had my schedule and I took great joy from crossing off each treatment after it was done.
Now I have finished treatment I can now think about starting life again although there have been changes
This online community really helped and being able to vent, share experiences,say things to others that I found difficult in real life was and still is amazing.

@Lizdeflores you are right. I'm trying to run before I can walk.
This thread is amazing. It's helping me keep sane. Thank you x

@TopOfTheCliff I'm part of the family history screening, my annual mammogram was on time in February I was expecting it to be later in the year. In fact I got a letter asking me to ring to book and when i did I was offered that afternoon. I had routine mammogram on the 5th, recall and biopsy 15th and results 24th so for me very fast. I'm not sure how its going to be going from here, I had my mri today. Having said that the breast care unit used to be full and now I've only seen one other patient each time I've been there I wonder if people are not presenting themselves for fear of catching covid.
According to our local news the Nightingale hospital is closing to covid and is going to be used for cancer screening so hopefully they can catch up

@AlbertCampion please don't apologise for comments about food, I don't even remember what you said, and would never be upset or offended by someone talking about their own experience, however different it is to mine! I lose weight very fast when I can't eat, but am naturally very keen on food and pretty greedy, so once I'm over the nausea I take great pleasure in noshing again - and happily that's where I'm at no!
However, sleep has gone out of the window . .
Will aim to catch up properly today.

Morning ladies

Semi back from the living dead after my double dose of chemo. 😴

@TopOfTheCliff thank you 😊 Keep soaking my PICC. All happening chez Top. I had a mammogram for bleeding from my right nipple then didn't follow up at 3 months due to the first lockdown which was my fault. That must have been the start of Larry growing.

@JustDavesWife you are very welcome 🙏

@AlbertCampion your PICC should be just fine this time. 🤞

@Summerdayshaze bless you, I have no advice but pleased the others can help a bit.

@Alittlewornout thinking of you today. I'm only approx 25 from the hospital so happy to come home after.

@BadEyeBri I have a very positive DH but still have that niggling feeling that it will come back due to being triple negative. Due to lockdown my children have kept me going but DD2 is back today, DD1 on Monday but keeping DS home as he's year 6 and I can't get him there and they aren't wearing masks or Covid testing. They are happy to let him homeschool.

Big wave 👋 to everyone else.

HC x

@Bloodybridget I am the same with food as you! I have lost a lot of weight as I haven't been able to eat and I think OC itself causes a lot of weight loss. However, I have always loved bad food such as cakes, biscuits and crisps so in the patches when I can eat, I am eating a lot of these. I must look thin as the food trolley lady in the chemo unit calls me 'my little lovely', whereas everyone else is 'my lovely' and I am and look a lot older than many of them! So sorry to hear about your sleep troubles - I have phases where I sleep 20 hours out of 24 and others, such as now, where sleep eludes me. I have been very tense since seeing the surgeon last week and am very anxious about surgery.

Hey Fizzy it's ok to be anxious about your surgery. It's a big undertaking. Worry about loads of things- how you will feel after, how long it will take to recover and get back to yourself. What you don't need to worry about is your clinicians and your care. Your anaesthetist will have worked out exactly what to give you and when to give it to ensure you anaesthetic is safe, stable and unremarkable. There are no safe anaesthetic drugs but there are only safe anaesthetists. Don't worry about your surgeon. They will have done this before. They have detailed knowledge of what's going on inside you. They know exactly where to place each cut, clip and ligature. They have a road map to your insides to show them exactly what they need to do and they have the experience and confidence to know how to deal with the odd unexpected thing. There will be a set protocol to deal with your recovery and your nurses will follow this to a T. Nurses are fecking amazing. They will sort your meds, make sure you aren't sore, manage your incision and and drains and make sure everyone else is doing their bit too. They will get you better. You will get better.

Hi Fizzy fellow hystasista! (horrible term but it brought a smile to my face) I would echo what BadEye Bri said some of the nicest care I received was in theatres. The staff and the anaesthetists scraped me off the floor when my attempts to hold it all together failed. The anaesthetist even gave me 'a sip of the anaesthetic' early from there on in I saw only 🌈.
Recovery was slow and steady the physio gets you out of bed on day 1 and from there on in it got a little easier each day. A big hurdle for me was having the catheter removed being able to go out to the loo really helped get me moving.
I won't say don't worry because it's natural but my experience wasn't as bad as I feared x

Hello all,
I've been reading this thread and finding it so helpful, but also feeling quite guilty that currently I am so wrapped in trying to process my own experience that I don't feel like I have the bandwidth to properly absorb or respond to some of really difficult things that some of you are going through, which I feel bad about. I guess it's a matter of time and being gentle with myself for now.

I'm now 12 days post my first chemo, and feeling actually really well in myself but this morning my hair has started coming out in handfuls. I'm finding that the initial elation of just surviving the hospital trauma (I was a medical emergency on admission as there was a clear potential for a major vascular incident, stroke etc, from the pressure of the mass on my main vein from my head to heart) and probably steroid-induced mood is now wearing off and some of the long-term unpleasant realities of being a cancer patient are creeping into my consciousness.

I have a very pedestrian question going round my head about the school run and wondered what others with young children who are undergoing chemo/CEV are doing? I could get away with not doing it as DH is always available, but I feel hugely sad about missing out on just that basic social interaction and involvement at the school gate. Covid rates are suppressed where I am, and our drop off/pick up is really scrupulously done with 2m distancing, but should I just be minimising any and all infection risk or is there a mental health/emotional balance here too? We've only moved to the area 6 months ago and have so few friends near by - the school gates are some of the few relationships I have. Apart from that I'm not going anywhere or seeing anyone bar my parents who are similarly hermit-like and make up our childcare bubble.

Hello again!
Right this will be a marathon post, I was so out of touch.
In no particular order -
@Starmer great to hear from you, and so glad you are feeling much better.
@AlbertCampion I just found your post a while ago where you talked about hating the weight gain, that would make me miserable too (I have actually been overweight most of my life, getting thin-ish with cancer is a complete novelty). But I hope that you can find love for your poor body too. When you are through with treatment, I bet you'll be able to get fitter and stronger again, even if you're never the size you'd like to be. Hope your new PICC line goes in fine on Thursday.
@KentishMama what brilliant news re selling and buying your dream house! May you have many happy years there.
@Acinonyx2 I don't have any one food I fixate on, in the first few days post chemo I just try very tiny amounts of anything I think I can tolerate, but as I get better, bacon, fried chorizo, roast potatoes and other root veg, halloumi, mashed avocado with lemon and chilli flakes, all seem to go down quite well. And home-made mushroom soup, no cream or milk in it. You have all my sympathy.
@MrsPnut I hope you get on better with the second surgeon. Yours just doesn't sound that involved!
@Redannie 118 I'm sorry to hear about the ovarian cyst, when will you get more info?
@TopOfTheCliff yay, a media star! It's good that you're helping with the campaign.
@FizzyOrange quite understand you being anxious re surgery. I found with mine that although it was a big complicated operation, it was managed so well, I really felt very taken care of. And I have the finest, palest scar line, now!
@Alittlewornout so tough for you - but that is good that you can have the chemo as an outpatient.
Welcome and good wishes to @maisiegirl, @Babamamananarama, @JustDavesWife, @Summerdayshaze, @Delamero, and @Lunificent. You have found the best thread on MN with the nicest, most helpful contributors. However long you're here, I hope you get all the support you need.
Waving at everyone else - I must stop cos I have a counselling session in a couple of mins. Will pop back soon.

@Bloodybridget you are fab for mentioning everyone. Me, I could hardly remember my own date of birth at hospital today!!
Anyway as you lovely ladies have all experienced my day was spent waiting.....
Appt at 11 finally stuff came from pharmacy at 2pm. 2 injectiobs into my tummy and anti sickness tablet and I was on my way home with a list of forthcoming appts and a box of anti emetics.
Ofcourse hadnt taken a book or anything as was told would be on and out. Luckily we are 5 mins from the hospital so sent DH home. On the plus side did get lovely soup and ok sandwich for lunch and by chance met the clinical nurse specialist for my transplant. Back tomorrow for 9am where I am assured its a 10 min job. We shall see!!!
@HumphreysCorner pleased you are back in the land of the semi living it sounds really tough.
Wishing everyone a peaceful evening.

@Babamamananarama I think you have to ask the clinical team. I am here as a lurker as it is my child who has cancer. She’s just had round 3 of chemo and has gone back to school. Hospital Advised that the greatest infection risk was from her own body. She really wanted and needed to go back, her mood is so much better and while I feel
Nervous I think it was the right thing to do. While she is physically well enough she will
Go as there will Be lots of times when at hospital And inpatient that she can’t go. I would speak to your nursing team and see what they say.

@BadEyeBri and @Lizdeflores thank you both for your reassuring words

@Babamamananarama I would ask your CNS. Mine is crazily busy and at the start would take a few days to reply to my message on her machine. I have realised that if I e-mail her the question she can then ring me with the answer and every single time this has been on the same day! I do understand what you mean about the unpleasant realities of being a cancer patient sinking in, I am starting to feel this 6 months in.

@Bloodybridget I do admire the way you can mention everyone. I must have chemo brain as I have to write everything down in a notebook. I don't know what would happen if I lost it. An example of my poor memory is that I sent my son in law out earlier for my prescription from Asda. When he came through the door with an Asda carrier bag, I asked him what he had bought and was hoping it was some nice biscuits or something and he said 'your prescription'. I had forgotten that's what I had asked him to get and was then surprised that I seem to have graduated to a carrier bag for all my meds .

@Alittlewornout and @FizzyOrange I don't remember everything! I make notes while I read the thread, and keep a spreadsheet! Some people have jobs, hobbies, children . . this is my thing!

@Bloodybridget still think you are bloody marvellous! I know my diagnosis is still new and part of my condition is fatigue but I feel so tired, not sleepy tired but I have inertia I sometimes feel I cant motivate myself to physically move. When I do, I feel a bit better but quickly sink back again. It took me 30 mins to muster up any energy to stick baked potatos in the oven for tea.
Everything is so much effort. Do others feel like this? I know I am going to need to push myself as this is not good for me physically or mentally.

@Bloodybridget I still think doing all that is amazing!

@Alittlewornout I feel like this in the first 10 days or so of my chemo cycle. Even having a shower is an effort on these days.

@Alittlewornout This chemo fatigue is a different type of tiredness to anything I've had before, eg from depression, anaemia or being a new parent. To me, it feels kind of like being underwater and I have to make a real effort to push up through the surface. I can't imagine ever being able to do any vaguely exerting ever again at the mo but I guess it will come back (DP is hoping so ).

It’s hard to believe I finished chemotherapy four months ago apart from the Herceptin injections. Since then I have had surgery and radiotherapy but they haven’t made me feel anywhere near as ill.
I am struggling to sit and rest as instructed by the nurses this week. Today was only a short gym session with the physio and I only dug two rows of the allotment (with one arm!) then undid my good resolutions with a twenty minutes blast on the exercise bike which I paid for with some nerve pain. Okay I will sit still from now on!
The good news is that energy levels do come up again once the poisoning has finished!
My DT article has been fun with lots of messages from friends and children’s friends about it. I hope it has helped the cause because I don’t like the limelight.

I am also in awe of you remembering everyone, @Bloodybridget! Thanks for your kind words - I am struggling quite a lot with body image at the moment. I honestly look like a potato on legs - big round tummy, weirdly flabby face and bald pate! But I am hoping the old me will come back eventually.

On that note, I had my first virtual appointment with an instructor from the SafeFit trial today. It was really good - she focused on well-being and gave me some things to think about in terms of fitness goals, but stressed that "you can't eat an elephant in one go" - I need small, manageable goals at the moment. I really recommend it for anyone wanting some guidance with well-being, fitness and nutrition. I signed up via the Macmillan website.