Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

New thread

@WorryMcGee

Yes, it's totally patronising, that's exactly the right word.

I so wish I'd replied with something like:

"oh I hadn't realised Paracetamol was an option instead of Epirubicin and Cyclophosphamide, Abraxane etc so I would definitely prefer the Paracetamol treatment plan please. I'm so relieved, what a huge relief - I will turn down the chemo now then, refuse it. Is it the same oncologist who needs to update my treatment and decide on my dose of Paracetamol or can you do that? Will I need to have blood tests and attend the chemo unit for my dose of Paracetamol every cycle? is it also 6 months of Paracetamol? Will I still need the Filgrastim injections and be totally immune suppressed while on Paracetamol?" etc etc

... but of course I was so taken aback I was speechless.

Yes the GPs won't let me on the online system, it's a village GPs and set in 1980, it says to get online you have to go in and show your passport. This has been done but they still won't allow it as apparently you have to have a special code as well. One that can't be emailed, posted etc but you have to show a passport to get it and have a receptionist who knows this system on at the time. I gave up on that.

I just phoned them again and ranted and eventually they gave in and have sent 3 months to the chemist. It will be a one off but at least once we have finished the get the right brand game I should have 3 months supply. I don't drive and DH is going away and DS is too ill to be left alone and its just a whole load of unnecessary stress. It's impossible to speak to a GP either, they are so overrun, you get given times for a months time with random GP, they are part of a village gp network so it can be any village gp up to an hour away.

Feel for your friend Top I would strongly advise a lawyer if they are threatening police charges and a baby, horrific if shes a caring Mum whose baby had an accident.

The hospital on the other hand were great though had a weird system where one department does not speak to another but all appointments get email for, all blood results through on it, mycharts, love that system. Maybe in 50 years the village gp will get it.

@Silkierabbit

I've got the MyCharts app from one of the 2 hospitals I'm being treated by (a famous major cancer hospital), but despite it having icons for Test Results etc the content is empty.

I have masses of test results on there, one doctor commented I may have the world's largest collection, and you can get the letters and results and graphs of past results, it's really good. But GP says they have no access and one department can't see another appointments, very strange.

My husband showed me the French system maybe 10 years ago and it was so much better than ours, any doctor anywhere in France could access full records. Which would save a lot if repeated bloods, gp always repeats bloods as says can't see hospital ones.

@Silkierabbit

How interesting! My GP could actually see my latest bloods (done by the mychart app hospital) because he commented on my neutrophils during the appt I had with him recently. But I can't see those results anywhere - not on the NHS or mychart apps anyway. The chemo nurses kindly give me a print out each time when I ask, but it'd be so much better on the app!

Mychart hasn't got any of my letters either. Nothing except upcoming chemo unit visits.

I hope it's okay to post here, please forgive me if not.
My (birth) Mother died of Ovarian cancer last year (4m, metastasized)
My partner died of Bladder cancer (2m, metastasized)

I have a '2nd-mother person' who has been my amazing best friend for 32 years.
She texted me a fortnight ago that she had been referred for a hard breast lump. She's had various scans, & 6 punch biopsies. She went in for results today.

I got a text just now:
'I was told this is one of the easiest to treat. Day surgery in the not too distant future. Range of bloods taken today. Team meeting on Tues where I will be told what else is in the plan ie oestrogen blocking meds'.

I hope you don't mind me posting here as this isn't about me but can I ask you (because I can't ask her today but I'm so scared for her) - this IS cancer, isn't it?

@Scandimandy a quick answer to the BMI - I recently (13 weeks ago) had delayed DIEP reconstruction with reduction on the other side. I had to lose 10kg before they'd even put me on the list to get my BMI down (well, I wasn't growing any taller, so had to lose the weight to lower my BMI!). It is a loooooong operation - I was there for 10 hours and I think the weight thing is related to the dangers of the anaesthetic BUT it was the best thing I've ever done. 15 hours under a bear hugger after was crap, but, honestly it's made me feel so much better. Definite benefits in that it will change shape as my body does, and that doesn't happen with an implant. However, I have some spectacular scars! I measured the longest one - 22" (I am not the most petite of people!), but they will fade and I'm 100% sure I chose the right op for me. I hope whatever you decide leaves you feeling like you again.

medianewbie Sorry to hear about your Mum and partner, yes your second Mum will have breast cancer, hormone positive if they are talking about hormone tablets. They often don't give the full plan at the start, they can start with surgery then they analyse results from surgery to see if chemo and radio needed. It sounds like your second Mum is relatively optimistic which is good.

Scandi I was told the limit for them operating is bmi of 30, I am well below but yes its another challenge if you are over that.

@Silkierabbit Thank you for replying. I really appreciate it.
I will move across to a 'friends & relatives' thread now.

Hi all I just wanted to pop on and apologise and say thank you. I burst in a few weeks ago in a complete panic as I'd gone to doc for irregular bleeding and was told I needed an MRI, blood tests for tumour markers and a hysteroscoopy as my womb lining was thickened and they could see something that they thought could be ovarian cancer, though they did say it was unlikely. I'd been on the thread before because I had breast cancer.
Some of you very kindly responded and you were so supportive and I didn't acknowledge....I went into a complete fug if I'm honest....and could only proceed with beta blockers and then burying my head under several buckets of sand only coming up to shovel down another pill. Though of course the 3am panics were there...every bloody night. It bought back all the anxiety from the breast cancer.
Anyway, I'm still waiting for biopsy results from my hysteroscopy yesterday, but while I was there they told me my mri and blood test results were all fine..and itw as a fibroid and not ovarian cancer (apparently it was weirdly placed so they couldn't see if it was coming from my uterus or ovary on ultra sound). THe nurse also said she thought it was unlikely I had anything in my womb as it looked very healthy (I felt strangely proud!)....though presumably it wouldn't be visible.
Anyway I finally feel able to post as my immediate panic has been alleviated...just to say thank you to everyone. My experience has also made me realise that I need counselling to get over my previous breast cancer diagnosis as I really span out of control with this latest scare with my catastrophising.
And I want to wish everyone the very, very best. I'm so sorry to read that people are having tricky times. And if anyone has any questions about er/pr positive breast cancer and tamoxifen then please do ask away.
Thank you again for being so kind to me and sorry for being so ungracious at the time...and if my biopsies are crappy from my hysteroscopy I hope you don't mind if I come leaping back in....

@bringonyourwreckingball omg DH and I are going to that gig too! Or at least planning to. I'll probably be having surgery basically straight afterwards and my consultant gently explained that sadly covid rules are still very strict so if I test positive it would be a six week delay and he really wants me to "crack on" with treatment. So idk if we'll go. Glad you could get the appointment rearranged though. If I don't make it I shall request pictures 😁

@Scandimandy fingers crossed for those lymph nodes and don't be afraid to share good news!

I've been battered with another round of biopsies this week, apparently breaking all the consultant's records for how many she does on one patient usually. I didn't know any better till she said that, just assumed it was standard 🤣 got lots of probably-not-suspicious lumps that they want to be sure about/want info on to help with the decision between lumpectomy/multiple lumpectomies/mastectomies.

Does anyone have any helpful insight on life post lymph node clearance please? I've been told that's a definite for me as there's cancer in at least two. It's now preying on my mind a bit as all the stuff online about avoiding lymphedema, cellulitis etc seems very serious. Is it basically a permanent change of not being able to lift anything too heavy and being careful about scratches etc? I know those are fairly minor issues in the grand scheme, but I'd like to feel that I will one day be able to forget that I Have Cancer and can just crack on and do normal things!!

@WorryMcGee I try and avoid my BCN. I was diagnosed during covid when we wore masks and were socially distanced. I couldn’t take the information in and I couldn’t hear very well. I saw the BCN had my diagnosis jotted down on paper and I asked her if she’d write my diagnosis down for me which she said she would ( when my sister was diagnosed she had a brief synopsis of her cancer hand written and a diagram of the tumour, it’s size and location which she found very helpful to refer to) She later gave me a sealed envelope which I hoped would have information but it just contained arm exercises. I phoned when I got home but could only get hold of her assistant who told me very confidently my breast cancer was insitu and not invasive. The next day the BCN phoned me and said said “ oh no lovey, it’s invasive haha whatever made you think it was insitu?”
On another occasion-she said “have a lovely weekend ( the weekend before my op and I was self isolating) I’m always here for you…..oops actually I’m just popping off to my caravan and I’m not back until Tuesday, haha”.

@AllotmentTime I had a full axillary node clearance on the right side in 2020. Not one of 30 nodes had any sign of cancer thankfully. I was told not to lift anything or do housework for 6 weeks. I had a drain which fell out early and I got a seroma which then got infected. I found the little heart pillow from the BCNs invaluable and also a hot pack to ease the pain. The wound eventually healed but I found when I walked or cycled I got a lot of nerve pain in my arm and side. This has settled over 2 years but I still take amitriptyline 10mg at night to keep the nerve quiet. Once it was all healed I went back to the gym and gradually built up the weights I could lift. I was able to sail my boat singlehanded round the UK last summer. My arm swells up a bit after effort but it isn’t lymphoedema and it doesn’t affect my hand.
On the left side I just had a sentinel node biopsy and one axillary node removed. It healed quickly and although 4 months on I still have nerve pains in my side and upper arm it doesn’t swell.
I follow advice to avoid sunburns and stings on my arms. I wear long gloves when gardening. I carry antiseptic to treat grazes. I don’t have injections or blood tests on the right side. I would seek help quickly if I got an infection. It is a bit annoying but it doesn’t really stop me doing things except manual jobs like polishing the car or painting a wall.
I hope that helps.
Top
PS My young friend is home with her baby thankfully.

@AllotmentTime i will definitely post pics if you can’t make it to the gig! I am so excited, i’m going with the friend I went to my first Springsteen gig with in the 80s and to several others along the way, she has been my rock through the double whammy of divorce and cancer and the timing is perfect as it’s 2 weeks after last chemo and 3 weeks before surgery. Which is precisely why I wasn’t cancelling this for anything. This has been the absolute shittiest and most difficult 8 months of my life and now there is light at the end of the tunnel I am grabbing onto life and opportunity with both hands.

I’m so sorry for everyone dealing with horrible news this week. It’s devastating and having to deal with the pain and grief of everyone around you is bloody exhausting as well. I hesitate to say this because I don’t know if it’s helpful or enraging having not been in that position, but I have met a few women in treatment recently with quite widespread secondary cancer who have been ‘managing’ it for quite a long time - it is in no way the life we/they envisaged but it’s still a life that isn’t all about the cancer. And the treatments really are improving all the time.

@freddiemercury don’t apologise that’s what this thread is for. You get the support you need at the time you need it and when the time is right you may be able to give it back. We’re all at different stages and with different levels of real life issues and support

Allotment I had full lymph node clearance in Jan 22 and recovered very quickly, a week when I took pain killers then none after that. No further cancer found. In the US they seem to do radio rather than this op due to lymphoedema risk though discovered that after - the good thing about the op is you know exactly how much cancer there is. Its reassuring when its no more though I would like them back. Heavy lifting think its none for 6 weeks (they will advise) then same as before. I swam 3 weeks after, but when wound healed. I had no drain. I have no cellutis, no lymphoedema, no swelling, full movement, full strength, no pain, some numbness under armpit - only time I notice is swimming but can swim fine. Main things are to exercise regularly after it once you are out of recovery period, not necessarily huge amounts - I do swimming, and be careful with sun so cover arm or factor 50 on the 3 days of the year we get sun. Other thing is you can't have bloods that side according to my hospital though some do allow it. They also said treat cuts asap and get antibiotics if needed but I have a big cat and never had any issues. Get painkillers in, I also stayed on a slope at night and think that helps with the fluid a bit and do the exercises they give. Hope it goes as well as it can.

By a slope I mean either a reclining chair like I had or a wedge pillow, just a bit of angle to help fluid drain. You get those lovely compression socks for a week. You aren't supposed to bathe either for a bit though I did wash hair but was careful - had a washing up bowl of soap and water. You aren't supposed to do that though first week but meh nothing happened, just need to keep wound dry. I got lots of soft things like fleece duvet, fleece sheet, fleece cushions, fleece onesie (though maybe hot this time of year but something soft) and also I set up things easy to reach first week so little side table for ipad etc.

Glad your friend is home Top that sounds like a nightmare esp with a baby. My friend's wife had similar when there's was a baby and he's an MP and she's a lovely Mum.

@AllotmentTime I had a full node clearance in early October last year. I was told not to lift anything, including my then 5 month old baby, which was frankly ridiculous (“can you get someone to give you the baby on your lap for a cuddle for 8 weeks” like I was a doting aunt and not her mother ffs) so I continued to lift her but nothing heavier. I did have issues with seroma, not infected just bulky, but after it was drained the second time it never came back.

I used to lift prior to this shitshow, including when I was pregnant, so I was also v upset about the lymphoedema info. I sought advice from a specialist PT and I have since incorporated weights back into my life. There are certain lifts/movements she’s advised against but they weren’t ones I did a lot of anyway (mainly time under tension like planks - which I can’t do well at the mo anyway with the diastasis recti that I never fixed because I found out I had cancer when DD was 16 weeks and that took over). Like a lot of the cancer info, it seems very one size fits all - assuming women aren’t interested in resistance training and are happy to do “arm exercises” as a workout. No shade on women who are happy with that, but that’s not all of us. I have almost full ROM back on that side, I know I’ll get it all back eventually I’m just very stiff in my upper body in general.

My mum also had BC at 37 like me, had lymph node clearance too and she uses her arm and gardens/DIYs etc without issue - the only things that have ever caused her arm to swell over the years are horsefly bites and she gets antibiotics v quickly if that happens.

@WorryMcGee that is funny about the planks. Nobody told me that and they are my superpower! I can hold one for two minutes when in training. I think one problem with the BCNs doling out advice is that they often aren’t parents and don’t exercise. They think running 5k or cycling 20 miles is a big deal when we know it’s just a gentle warm up. They don’t follow evidence they just dole out Trust leaflets that are out of date and very conservative. I am exaggerating but a lot of the team I see are like this. Luckily I see the boss lady who is great and understands me! I think I was a bit of a handful!

Does anyone have a suggestion for a reliable place (other than my very quick google) that I could read a bit about metaclopromide? It's been noted over the past few weeks that my heart has an irregular beat & I'm being urgently referred to a cardiologist. It's only been since I was in for the first drain & that whole week was so stressful it sent my body into total shut down mode & I really struggled with everything.

Out of idle curiosity, and because it's the only recent change, I googled to see if it could be that causing it & google suggests it could, but I'd like to go in with some better understanding of whether it may be that. Thanks 🙂

@lucysmam look at the BNF or British National Formulary. A quick glance says yes arrhythmias are an uncommon side effect. I will never forget a night as a Casualty Officer when a youngster came in with neck dystonia due to metaclopramide. It was terrifying for her! Her head was spasming all over the place.
Have you got an alternative? I’m a big fan of domperidone.

@TopOfTheCliff many thanks (you seem to be a fountain of knowledge on this thread - I've found your posts really interesting & informative!). I don't have an alternative to hand but am seeing my consultant on Wednesday so have written myself a note to ask for one then.

I feel absolutely fine atm, no other symptoms to go with it but the registrar listed things to go to a&e RIGHT NOW with, in a very brief call to tell me about the cardiologist referral, yesterday.

I'm not sure I want to chuck any other problems in the mix & this seemed a sensible place to start since it's the only recent change apart from the paclitaxel.