Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

@mowly77 yes that’s so true “ the breast cancer meat grinder”. I feel the same, when I was accepting my treatments there was no problem. Now I feel like I’m being demanding, neurotic nuisance. I’m not blaming the health professionals, they are pushed for time. I feel almost like I’m not believed or imagining these symptoms but I’m really not. In March 2022 I felt like a normal 61 year old woman recovering from a marriage break up but feeling physically fit and mentally upbeat. Now I feel like I morphed into an old, Ill person’s body who is completely conflicted by medical advice

I've said this a few times, but I went away and did my own research and disagreed with my oncologist because I realised I was an outlier in a very big group (endometrial cancer where there isn't so much research) and their treatment plan didn't fit my situation. The Royal Marsden second opinion agreed with me. I now feel every conversation I have with my hospital is a battle, and the CNS' attitude is quite unsympathetic to me. I don't feel anyone's on my side or will discuss anything properly. It's caused me more stress than the cancer.

@Mycatispretty the stats suggest that stopping moderate alcohol intake gives you a 15 percent reduction in recurrence rate and exercising moderately for at least 150 minutes a week gives you a 48 percent reduction in recurrence in BC. It makes Arimidex look a bit pointless when you consider the cost to your well-being. I did everything right and still got a new BC primary so I’m a bit less obedient now.
I loved being a GP and was invalided out during the pandemic just in time for my pension to kick in. I am so relieved I don’t have to go back as the job and the NHS is intolerable now. I feel so sorry for my hardworking partners putting up with all the rage as everything is being blamed on them. It’s probably better this thread doesn’t descend into politics so I won’t say any more!
On the positive side for you, emerging from this hell we are going through, you are like a butterfly emerging from a chrysalis not held back by the cheating EH and you can make your life exactly how you want it to be going forward. It won’t be what you expected but it might be even better! It takes time to recover from the trauma and that is why there is so much help after treatment. I have a lovely healing yoga class which is wonderful. Is there a Maggies Centre near you? My local Macmillan Lodge has been shut for two years but are finally noticing the rest of us are still here.
I’ve got an 88 year old DM who is still driving and two 89 year old PIL. They do have a great perspective on life I find. Looking after them helps me feel useful when I am otherwise a drain on everybody. Today I shall order everybody’s online shopping.
Happy Monday everybody
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@mowly77 Just to warn you (or rather, prepare you for the frustration!) - getting the actual drugs out of the hospital pharmacy is like, its own deal. Once you have blood tests, your onc has to sign off (aka click a box online) and then there is a separate 'lady/man behind the curtain' at the pharmacy - a specially trained pharma onc who does a second check. It is only once THIS person clicks the box that the drugs are released and can be pulled by the pharmacy tech.

Because of this process, the damn pharmacy is, and always has been, the real hurdle in getting out of the hospital in a timely process. I can remember crying in both pain and frustration waiting on pharmacy at my first hospital, because it was so disorganized. Current one is a bit better, but it can still be a 45 minute wait. It makes what should be a 1 hour blood test and MO visit into like a 4 hour ordeal. More than a few times I have just left if I knew I was due back at the hospital for PT or scans or was in the area and could pick up the drugs later. Id recommend planning to get a coffee or do errands!

@TopOfTheCliff oops I must admit I’ve been drinking wine this weekend to help me deal with my anxiety but sometimes I think insomnia coupled with stress which releases cortisol is harmful as well. I’m not normally much of a drinker but the last couple of days a couple of glasses of wine helped me sleep. My mum always says, do anything that helps you get through (in terms of eating and drinking).
You were indeed lucky to escape from medical practice during this stressful time of stretched resources. I have to say the majority of interactions I’ve had with the medical professionals have been very positive.
As the arimidex leaves my system and I feel a bit better I will definitely up my exercises.
I’m so sorry you have had a second diagnosis- sending you big hugs. You sound very strong.
Thank you so much for answering (and others that have too) you have helped me get through a weekend of horror both mentally and physically.

Herbal The pharmacy thing is annoying isnt it. I have to go for a blood test three days before I get my meds signed off (30 mile round trip) then another 30 miles to collect meds. Pharmacy wont allow meds to be collected else where nearer to home. If I cant do the trip Im stuffed, go no one else to collect for me.

ah yikes Herbal & onlyoneofme yes they already mentioned there is usually a wait for the drugs & if they said that then there will be a massive wait! They make all the picking-up-drugs appointments for around 3 but one of the nurses said they're never ready at that time so ... what's the point?! I shall be prepared to wait & do errands. I'm also hoping to be able to do this whole process at a small community hospital nearer to me (until, and if, I can transition to Marsden) which offers more scope for actually running useful errands. Current hospital is a good ways away from city centre and I can't drive so I'm stuffed... I'll be taking in a long book.

I'm going in next week for a lumpectomy. I've had conflicting information about what to take/wear help please. I've never had surgery and only stayed in overnight in maternity.

The first info was to take button front pyjamas because they'll need to be able to get at dressings etc. so I bought some nice button front PJs.

Then I went for my pre op assessment and they said just bring a dressing gown or cardigan and slippers for when you walk to theatre in a theatre gown or you'll be cold because they fasten at the back. You won't need to get undressed until you go to theatre just dress comfortably. There's a leaflet that takes about taking a book (although I'm on the morning List) and about a tv lounge, so I'm thinking I may not be in a bed ???

Should I take a drink and snacks?

Hi @MrsMontyD so you’re definitely staying in overnight? Sounds like it (but I had mastectomies, not a lumpectomy, so hopefully someone better informed will come along! ) But for an overnight yes, all the things they said; maybe a change of pyjamas too in case of any fluids!; I would also add headphones & smart phone / tablet / laptop etc loaded with podcasts / audio books / shows etc; and an easy to read book; then some travel size toiletries including your usual moisturiser / hairbrush etc so you can have a nice wash/shower/bath if they have one; they will give you a psychological boost; and earplugs and an eye mask; essential if you want to get any rest. I also take a notebook and pen to write down notes / questions / thoughts and sometimes colour pencils, so I can do some soothing drawing or doodling. So a puzzle or colouring book if that floats your boat, or any other mindless craft projects you may have on the go.

if you take any other regular meds take them along; and yes some portable drinks and snacks would be good. Although you might not be very hungry after a GA it’s good to have some choice. Cereal bars, fruit. Fruit juice. Best of luck, it will go fine I am sure.

Sorry, no it's being done as a day case, the pre op assessment nurse said I'm on the morning list, i have to be there at 07:30 and I'm hoping to be home in my own bed by mid afternoon.

Ah I think I was confused when you said you’d never stayed overnight before!

well I still recommend headphones , earplugs and eye mask as hospital wards are noisy places any time of the day or night! And maybe simple toiletries for a
wash before coming home but not loads. And yes snacks and drinks ! And a book / something to pass the time

@MrsMontyD Usually they keep you in the pre-op area where you will get your wristband and be prepped appropriately. I seem to recall getting the note as well about a cardigan and slippers for the walk down to the theatre, but pffft why bring more crap than you need to? Ive done that walk twice and at least at my hospital its not more than two minutes. Ive also received hospital socks (with the grippers on the soles) for the walk, and the dreaded net underwear which doesn't ever fit me at all (its for sanitary reasons). They can give you an extra hospital gown to wear front to back (or back to front, depending on how the first one is put on) so you aren't flapping in the wind as you walk down.

Definitely bring a book or other entertainment; for one of my surgeries I was on the morning list, but then I got changed around to the afternoon list when I arrived due to an emergency case. Man did that suck as I had to fast for that one, but I had a book and just sat quietly in the pre-op room on a chair. I also brought easy snacks for after (kind bars and the like), but pay attention to your instructions as for quite a few surgeries they need your stomach empty for various reasons.

Thanks, I definitely don't want to take loads of unnecessary stuff, I'm thinking I'll go in joggers and a T-shirt and take PJs, dressing gown and slippers in case I need them, a book and a drink and snacks and hopefully that'll be ok.

Im massively overthinking and need to calm down. I went off sick from work yesterday as it was all getting a bit much, when I'm stressed I overthink. Stopping HRT hasn't helped.

Hi @MrsMontyD , good luck for your surgery. I had a lumpectomy and node clearance last month as a 'day case' but ended up staying in overnight, even though I was on the morning list. I think this was unusual, but they were short staffed and had no one available to discharge me. I was pleased I had taken pjs, clean underwear and wash stuff just in case. My other top tip would be that if you get asked if you want to order a meal for the afternoon, order something substantial. Jacket potatoes are usually a safe bet in hospital. I only ordered a sandwich, thinking I'd be going home to a home-cooked meal that evening. So then when they kept me in, I was absolutely ravenous, not having eaten for 24 hours...

Hi @MrsMontyD you don’t need to take too much stuff. Here they take your bag from the preop admission unit to meet you at the post op day unit so you don’t want valuables lying around. I found a book and puzzles good for passing the time.
I’ve had a shocking couple of days since EC3 which I think is either the filgrastim causing bone and spleen pain or my guts seizing up. I’m in endurance mode currently but hoping to have a shower and potter round later to take coffee with MIL89. A right pair we will make!
My main entertainment currently is Twitter. I’m addicted to it. How small my life has become!
Sending greetings to all going through it
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Sorry to hear you're struggling, @TopOfTheCliff . Is EC3 your last one, or are you having 4? Hope you get over this hump and enjoy your coffee with MIL. I'm not sure Twitter is good for anyone's mood, but it can be nice if you are able to connect with people and stay away from the trolls and extremists!

@MrsMontyD
I had my lumpectomy on 21st September, and was dreading it! Got there at 7 am and had a couple of minor procedures (that I'd blown up out of all proportion) before 9 am, in readiness for surgery. I took a magazine as I knew I wouldn't have the focus for a book, but actually spent most of the waiting time chatting to my neighbour. I didn't go down until after 3pm, but made sure that as soon as I was awake enough I ate a sandwich and went to the loo, so that they would let me out!

I wore a button up shirt and leggings when I went in, which was a good thing to put on after the op. I also bought a couple of front fastening nightgowns, but to be honest, I could have coped with one, as I was very quickly into my normal nightclothes. Glad I had lipsyl with me! I also took in some soft shoes (I don't wear slippers) and a dressing gown, although I kept my leggings and top on for the morning. I was taken back to the same spot in the day case ward post surgery, that I'd been in all day. I had taken my own sandwich in, so that I knew there would be something I would want to eat waiting for me, rather than taking the luck of the draw with the hospital food - but I am fussy!

I kept on top of the paracetamol for a few days when I got home, but tbh the recovery has been fine. Just had a consultant appointment today, and they didn't find any surprises, so it's radiotherapy and the anti oestrogen drug for the next 5/10 years.

I really hope your 'journey' is as smooth as mine - I know I've been lucky.

Thank you, that's so helpful.

I've already had the radio transmitter thingy (wire free guidance) put in and I'm going the day before for the dye injection and an ultrasound, so hopefully just the actual operation to have on the day.

I've got a easy reading type (sun lounger) novel to take with me for entertainment, definitely need to give more thought to food, I'm vegetarian and the options can be very limited.

Thanks @dotty2 I am waiting to hear on Friday whether my oncologist wants me to have another dose of EC or not. This is my second time through so she is worried about the cumulative affect on my heart. If she is happy with progress I can go on to Paclitaxel next time. I am definitely getting more tired with each round. I am back in bed now reading the papers and resting. I am bored of this!
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@ajandjjmum glad that there were no surprises for you. @TopOfTheCliff hope you feel a bit better after a rest. @MrsMontyD I've not heard about the transmitter thing before, is it something lots of people have before surgery?

I've not long got home from the pet-ct scan, worse part was having my arms above my head for so long. Results should be with the consultant in about two days so won't be long before I find out if it's spread further that the lymph node that was biopsied at the first breast clinic appointment. Fingers crossed x

It's quite, new, mine is the 12th one at my hospital, it's in place of the wired tracers, they can put them in anytime better surgery. It's a 1/3 matchstick in size, basically the surgeon has a handheld device that locates it.

@fudgecat best of luck with your PET results. I had one a few weeks ago and found it quite relaxing. Almost fell asleep 😂

Round 4 for me on Thursday. CA125 levels are the exact same as 3 weeks ago. She’s not concerned given the clear PET and thinks it could be being caused by chemo. It had gone a lot lower before starting chemo. I’m half reassured but half just thinking FGS just go DOWN please.

I started back at work last week, part time. It’s partially good to be back and partially daunting too.

How is everyone? It’s very quiet here lately.

I’m off for round 4 this morning. Dreading it.

Has anyone got any tips for constant nausea? I seem to feel mildly sick for about a week after treatment, like morning sick levels. Constantly there but not bad enough to warrant taking the Ondanestron and exacerbating the constipation! I’m using constant eating to help it but I’m just piling on weight!

Also, would anyone be interested in 2 lovely silk lined chemo hats from Etsy? They’re beautiful but the line of them doesn’t suit me so I’ll never wear them. Happy to pass them on to anyone who’d like them. One is a cheerful blue white and red pattern and one is black with vintage roses on it. Can post pics if anyone is interested.

@AGreatUsername Good Morning! I relate to your grumbles about nausea. I take domperidone for a few days after each treatment because it doesn't seem to have side effects.
Nausea seems to be my default symptom. I find I get queasy when I am anxious, when I am telling friends about my treatment and progress, and when I go anywhere near the hospital I get anticipatory nausea. I think it is vagus nerve activity and relaxation and breathing exercises seem to help.
Eating carb snacks helps but I am trying to avoid piling on the pounds. This week has been a write off as I have been so exhausted I can barely walk up the stairs. I am very bored and frustrated but it is just part of getting through the treatment and beating the cancer. It feels like I am treading water at the moment just waiting for time to pass.

How are the rest of you doing? @dotty2 do you have an appointment for results yet? Sending good vibes to all waiting on results etc xx
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Morning all. Hope round 4 goes ok for you @AGreatUsername
No news from me, just been out for a run while I still can, obviously surgery/chemo will put an end to my running for a while.