Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

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)

Hey @Bloodybridget I’ll take your congratulations as I have just finished my 16th and last round of chemo! Sorry to hear of your struggles. I have been offered counselling over here but not used - but all the oncology nurses say patients who take up the service have found it to be very helpful (and say it is definitely not “therapy”).

I would also second the use of ‘ice’ gloves and socks to minimise/avoid neuropathy/nail damage as mentioned above.

Hope everyone has a happy new year celebration tomorrow!

Yay @ElaineMarieBenes! And thanks for comment re counselling x

@Zorgothslugofdoom I'm also a wet lettuce, so thank you - that's made me feel a bit better! You got through it without sedation, which sounds amazing. I'm thinking it sounds about on a par with a biopsy/clip placement, maybe a bit more involved? (They managed to accidentally cause a small puncture to my lung during one of those procedures - thankfully, self-healing now - so I don't have the rosiest associations...)

@KentishMama yes, the waiting! Always the worst. I know I'll feel silly for worrying about this so much once it's over. It's the unknown, and the dread of more invasion. I need to remember that it's a good and useful thing that I'm getting! Congrats on finishing your last chemo, by the way - definitely something to celebrate!

@Bloodybridget I’ve had counselling at various stages in my treatment, and have just restarted again after a few very “down” months. It’s definitely helpful to have someone to talk to that isn’t “invested”, if you see what I mean. I’m sure my poor DH, who has been wonderful throughout, thinks I should have moved on by now, so I find it helpful to talk to someone external, who’s seen it before, and who tells me it’s ok to feel the way I do.

I recall you’re a rower? (Sorry if I’ve got that wrong). Not sure if there’s a rowing equivalent, but in sailing they say the time to put a reef in your sail is the first time you think of putting a reef in - ie if you think you’re going to get over-powered, it’s better to do something about it before the conditions get really bad.

@Bloodybridget sorry to hear you're struggling. I saw a counsellor weekly between stem cell harvest and discharge from hospital - so maybe 10 weeks. It good to just talk, without judgement or opinions. I'm thinking I might call them again as now I've finished treatment there's a massive hole in my life and I feel adrift. I thought I might find post treatment harder - I think i was right.

Today I cleared out my medicinal paperwork pile. I feel like I've thrown out a ream of paper just in appointment letters.

Thanks very much @Toofaroutallmylife, I'm glad counselling has been useful for you. My DP doesn't have any expectations of how I will be feeling or coping, and I can be honest with her, but I don't want to be constantly, or even often, saying how bleak and pessimistic I feel. Also maybe me talking to a counsellor will help us have some of the most difficult conversations, if it comes to that. I am a rower, well remembered! My analogy might be, if I'm coxing and there's a double width barge coming towards us, slow the boat in good time!

And thank you to you too, @InOtterNews! I can quite understand how you're feeling adrift now. Hope you can find an anchor x

@Bloodybridget I had psychotherapy last year and it really helped me so I am definitely a fan of talking to someone who isn’t invested. The Penny Brohn Charity is involved with the cancer centre I go to but I think they offer counselling for people affected by cancer. It may be worth contacting them. www.pennybrohn.org.uk/find-help/support-national-centre/appointments/counselling-service/ The lady I saw was keen on a holistic approach to care.

Great news to all that have finished treatments, on Saturday I will be half way through stage 1 of many but just ticking that off will feel good. Except my oncologist today said that during week three is when she will expect all the side effects of chemo and radio to kick in. Thanks for that, I was feeling pretty positive until that point.

I should also have asked her about a port, I might email her secretary whilst I think about it because I will need it going forwards for brachytherapy and the next stage too.

Thanks @MrsPnut and I hope your side effects are tolerable. A friend sent me a link to Cancer Counselling London, a group of therapists who have extensive experience, and I have contacted three of them to make a start. I'm sure most of them are involved in various set ups and charities.

Evening ladies, I have just been catching up on your posts. I had to be admitted to hospital again on Monday for an ascitic drain and came home tonight.

It is interesting to read about others' reactions to your diagnoses. My mother doesn't like to talk about it at all and always changes the subject - she is frightened for me as I would be for my daughter. I have to say my sister strikes the correct balance, always sensitive and non-judgemental. Most friends are in the 'if anyone can beat this you can, you warrior lady' camp whereas one friend is almost composing my obituary.

backformore - yes - similar level of discomfort to clip insertion/biopsy. I was extremely upset when they told me they were doing it without sedation - but I coped ok, and it honestly wasn't too bad at all. It was sore afterwards for a couple of days, but it made bloods and chemo so much easier. I was also really unlucky and picked up loads of infections during chemo, and was admitted to hospital pretty much every cycle - it was a godsend for fluids, antibiotics, bloods, etc while I was in hospital. Obviously, hope noone has to be admitted to hospital - but if it does happen, a port makes life easier!

We're preparing for a pizza party and film night for new years eve with my 7 year old tomorrow. Hope everyone can enjoy some rest and relaxation! 🙂

Thank you again for that! Enjoy the pizza party and film night - sounds like something my 8yo would love, too!

Hi everyone, don't know if you remember me, but thought I'd pop on and see how everyone is? Hope you're all well and had as good of a Christmas as could be. Just thought I'd say hello and sending virtual hugs to those who need it xx

@Bloodybridget I was offered psychology when I started chemo.I found it very helpful to talk to someone who was removed from my situation. It didn't give me the 'answers ' but it did help me to look at my situation from a different angle. Also I came across a charity called Ovacome and they offer a lot of online support and they also have a range of interesting seminars that they are running in the New Year.
I wish everyone that has had surgery or chemo a good recovery and a peaceful new year. Xx

Hi @Lizdeflores, thanks for this, I have looked at the Ovacome website a few times but hadn't thought of checking out their support mechanisms. I will look at the webinar stuff. Hope you are feeling reasonably ok atm. X

Afternoon all

Just an update, I had a biopsy on my swollen lymph node yesterday and on Wednesday I'm having an MRI on my liver as the previous MRI showed possible cysts which need investigating.

The reason Larry hurts so much is that the cancer cells have turned bad so causing swelling and pain so a lovely consultant prescribed codeine and laxatives.

The best news is my nurse managed to get my oncology appointment moved from the 18th to Monday the 4th. Hopefully chemo can start soon after as the consultant said treatment needs to start soon.

I see talk of protecting nails, will I lose them as they are the best thing I have and the strongest.

Sorry it's all about me, will catch up properly tomorrow. Hope you all have a good evening, roll on 2021.

I had one session of counselling but didnt continue. I felt the benefit to me was offloading to someone who didnt know me instead of boring my friends yet again! I think it was like chatting to the Samaritans or writing it all down but didnt see how the counselor could actually help me.

On another lighter note, can anyone tell me why when I have lost a lot of my HEAD hair through chemo why do I appear to be growing a beard !

Nearly time for Happy New Year wishes but I will hold back a bit longer.
I had my op ten days ago and am doing okay. Typically I am allergic to the skin glue and have a horrid itchy rash but it’s good therapy picking out all the rubbery bits from the wounds and it’s going slowly.
I also have massive armpit swelling but weirdly in the middle is a strange egg like lump. It could be a stray missed lymph node doing the work of 30 or it could be a haematoma . I am trying not to think about cancer because that has all been blasted away by the chemo. I have follow up next week for results so I will ask them then. Gibber!

Yesterday was lovely. In the.morning my DS came with his GF and did lots of socially distanced useful jobs clearing garden rubbish and recycling and washing up as DH has got just a little behind!! That boy is a delight! He is a neat freak who understands why the mess distresses me.
It was our fourth wedding anniversary so we went out for a meal before everything shut down. People keep trying to tell me what a bad year I have had but I have so many good things going on I don’t see it.
@thereisonlyoneofme I have very little hair but DH has grown a horrible beard to even up the average hairiness round here.

I’m not in need of therapy but I really want a good bike ride. I’m going to go and sit on the turbo bike just for five minutes. What harm can that do? I’m so bad at sitting still!

Best wishes to all. Keep going, step by step, towards the future.

Im so disappointed on Tuesday I had my operation and was told on discharge that the Macmillan breast care team will contact me the next day re dressings etc.
No one phoned so at 2.30 I contacted them to receive a call from a support worker who said there was no one in and she will get someone to call today.
Today no call have left a message at 3pm for a call back, they finish at 4 so now will have to wait until Monday now.
No one has said when I can change or remove the dressing. When should I start my excercises.

Maybe I'm being impatient but if you're not informed about the after care what should I do.

@Noidea2114 I would call NHS 111 and ask for advice - I would definitely not want to wait.

@Bloodybridget I had a zoom with someone from the support group at the hospital and we have another one booked. It wouldn't do if I really needed that as serious counselling but it's a safety net and an opportunity to offload to an outsider.

I have had psychotherapy several times both NHS and private (I've also been a counsellor in a specific context and have some professional overlap with the area in general). The most important thing is that you click with your therapist - with the right match it can help you unravel your own thinking better than you can do yourself and provide an internal reference going forward. With NHS and similar you don't usually get a choice of counsellor/therapist and personally I had the best experience going private. Never shy away from shopping around.

I'd love to either go back to the therapist I saw previously or perhaps a new one with experience in this area but I can't justify the expense just now. I'll see how I get on with the support chap next time.

You may find someone suitable through your hospital or similar - private therapists usually list areas they have particular experience/interest in and I did short list 3 local to me for example with a view to specifying a set number of sessions.

@Acinonyx2 yes thanks for comments and advice - I shortlisted 3 therapists from the Cancer Counselling bunch and will have an initial session with two of them next week (the third hasn't responded yet). I am very much thinking short term, I don't want to get mired in anything wide-ranging.

@TopOfTheCliff Keep still woman At least try not to injure yourself!

@HumphreysCorner I am waaay more concerned about my nails than my hair. I oil them constantly. At first I was pessimistic as they got ridges and hurt and I can feel the forefinger nails thinking about parting company form the nail bed - but that seems to have stabilised and not got any worse and I'm hoping it won't. My nails grow very fast and I thought that might make them more affected.

@Bloodybridget Maybe we should both book a few sessions and compare notes

Someone phoned me back at 3.55pm. I have been told to take the dressings off and I can start my excercises feel a lot better now.

Happy New Year to you all, I hope that 2021 is a good year for everyone.

Just had chemo number two and it is already hitting harder - have been sleeping and feeling v nauseous all day. Just came on to wish everyone all the best for the new year. Sorry I am being really crap at addressing people individually - everyone seems to be going through so much at the moment. Sending lots of positive and hopeful thoughts your way, while simultaneously being a miserable git and acknowledging how shit our situations are. 😬