Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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Ah, I forgot to comment on the hair dye topic: I dyed mine less than 6 weeks after the end of chemo. The regrowth was almost translucent / very mousy at that point. I used my "normal" medium brown dye (the ammonia-free kind that is supposed to wash out over time, I think they call it semi-permanent?), and it came out more or less orange. I looked like one of those really cool, brave people who dye their hair pink or blue. It was a huge improvement on the mousy hair, even though I hadn't planned on going that bright!!!

I had my Breast Clinic appointment today which turned out to be a routine surgical review of cancer no 1 from 2020 and cancer no 2 from 2022. The surgeon was so kind and understanding about the random bad luck I have had. She has arranged a bone scan to check out my sore shoulder even though neither of us is too worried. She also unexpectedly agreed that scar no 1 which is very puckered and tethered needs tidying up. She has put me on a list as a short day case to reshape it. The seroma and infection and fistula left it all a bit messy. I left feeling very well looked after. She even understood about the Fear of scan results and has promised to call me. How refreshing!
I’m aching today after my catering exertions but happy enough.
Thanks for the hair advice. I shall go to town tomorrow to investigate options.

The bastard is back. Fluid in my pelvis again, a suspicious node and a few other <1cm nodules in my pelvis. Also a lymph node in my neck of 0.9cm but she said she isn’t concerned about that although I am unsure why.

My case is going to MDT next week for a plan. I want to go to the U.K. expert for a second opinion, I think she is at the Royal Marsden, how on earth do I do that?

Oh @StressIsMyFuel that is a hard blow. Why not ask the oncologist to help you? They may already know the experts and can send relevant information. Most sensible consultants aren’t threatened by a request for a second opinion.
Look after yourself. You must be devastated

So sorry to see your update @StressIsMyFuel .

Really sorry @StressIsMyFuel. You can ask oncologist to refer for 2nd opinion on NHS, but if you’re going to pay then they told me the GP had to refer me. They are perhaps not concerned about neck if it’s not a traditional metastasis pattern

@StressIsMyFuel I'm so sorry to see this news l. I'd also ask oncologist for help regarding opinion from Marsden consultant.

Great thanks all, she is calling me again tomorrow so I’ll ask her to help me out. Must go and find the actual name of the doctor I need now!

This is so bastarding unfair only 9 months after finishing chemo. My CA125 has risen consistently since surgery so obviously it was there all along and just waiting to be big enough to spot.

Sorry to hear your news Stress and hope you can get a second opinion quickly. Maybe contact the Royal Marsden and ask them.

I’m so sorry @StressIsMyFuel - I must have a similar cancer, and this is what I fear too. Wish I could give you a hug. Xx

Thanks everyone, I did go a bit MN on that police officer. His face was a picture, I thought he was going to throw up. He was just a bully though and not even a traffic cop, he had no reason to stop me 😡 I spoke to him in the local language too which I think enraged him more. I'd love to know what he said to his cop buddy who was sitting across the road drinking his iced latte 😂

Thank you for all your tips on dyeing hair after chemo. I'm planning to shave mine and going to look into false eyelashes and brows - my nail technician is also a beautician and does both of these 😁

@PollyCreo if you're no good with eyelashes (like me!), I can recommend a liner glue. You literally draw a line like with liquid liner then put the lashes on. It's really easy. I only bought a cheapy one to play with so would imagine a branded one might be better too.

@StressIsMyFuel sorry to see your update.
@isaxx thank you. You're the same age as me. Having been diagnosed in March 2021, an immediate DIEP wasn't an option whereas the immediate implant was and I could be done as a day case. The new breast was fantastic shape wise but I look very wonky up top now due to the capsular contracture. It's fine with clothes on and I wear padded bras which helps too.
Apologies, as this seems quite trivial in comparison to what others are going through right now.

@StressIsMyFuel I'm so very sorry to read your update. Is the doctor you're searching for Dr Susana Banerjee at the Royal Marsden? Or was it the surgeon Prof Christina Fotopolou you were looking for? I think she's at another London hospital. I really hope you can get some help with your referral tomorrow Xxx.

Ooh that might be her! Other people have recommended Charlie Gourley up in Edinburgh too. Apparently he takes NHS referrals so I’ll be asking my oncologist to refer me to him tomorrow.

@StressIsMyFuel sending hugs and strength.

Does anyone want some false eyelashes- I bought some but never used them. Happy to post them to someone.

@StressIsMyFuel I'm hoping you can get your referral sorted out tomorrow. There's another one I've thought of - some of the ladies on the OC Facebook group recommend Prof Jayson who practises at the Christie in Manchester.

@StressIsMyFuel oh no! Thinking of you. I hope you can find someone who can give you the best plan of action for your situation. I am being treated at the Royal Marsden and everyone I have seen has been excellent. That said, different cancer so cannot help with specific experts. Keep us posted. Sending love and strength.

@LemonDrizzle10 if no-one else can make better use of them, yes please to the eyelashes 🙂

@lucysmam PM your address and I’ll put them in the post

@StressIsMyFuel

I'm so, so sorry to hear your news.

Here's the Royal Marsden NHS second opinion page:

https://www.royalmarsden.nhs.uk/about-royal-marsden/access-policy

They say this (NHS):

How do we manage second opinion requests?

Due to the high number of second opinion requests The Royal Marsden receives, we are not able to accept all referrals for a second opinion. To avoid delays, for all NHS second opinion requests, please aim to keep the referral information to a maximum of 10 pages which should include the following information:

• Referral letter
• Last hospital letter from local oncologist, surgeon or other specialist
• Relevant scan reports
• Histopathology report

Where the referral is accepted, a clinician will review the request and

• will provide a written second opinion for the referring doctor, or
• offer a virtual or face to face consultation if The Royal Marsden can offer a different or specialist treatment, or entry into a clinical trial.

___

This is the private medicine side of the RM, but might be of some use because I think it'd give you more flexibility to book with the person of your choice and more quickly:

https://www.royalmarsden.nhs.uk/private-care/second-opinion

Here's their form:

https://www.royalmarsden.nhs.uk/private-care/second-opinion/form

Thank you so much!

@LemonDrizzle10 thank you!

Hi everyone, I am new to the thread and hoping I can pop in for some advice and support. I have advanced Hodgkin's lymphoma, having 6 months of chemo. I'm towards the end of my second cycle of escalated BeacopDac and have had a terrible time, in hospital for most of the last 6 weeks with infections, sepsis, hypophosphatemia, blood clots, failed picc line and other complications! Currently in hospital with neutropenia and a problem with my liver and really hoping to be out in time for school starting next week. I have two young children with SEN and am normally a full time carer for my son so this summer has been very hard! Luckily DH and my mum have stepped up, although DH has his own health issues including skin cancer so it's not easy. Anyway, I have a very small but important to me question that I'm hoping someone will be able to help with! I've had my picc line removed temporarily and a new one will go in on the 12th of September. This leaves me with a week or two where I could potentially have a bath! This used to be a real treat for me and I've missed it. I'm just very susceptible to infection, and still on chemo, and wondering if it's safe to put anything at all in the water? Are chemo safe washes like MooGoo which I'm using ok? Would table salt be ok & good for infection prevention? I've seen Epsom salts mentioned but I've had so many electrolyte infusions I'm nervous of upsetting any levels. Should I just use plain water? Any tips much appreciated!!

@namechange0998776554799000 I'm sorry I don't have any advice for you - I have no idea whether anything in a bath would affect anything. I hope you can enjoy your bath in some form though; I'm usually a shower girl but have been considering a loooong ass, bubbly, soak for a while now.

16/18 just done. We're off to try a new pizza and burger restaurant near a local lake & shopping outlet now. Last one with the girls, as they're back to school and college next week, which will be weird!