Oncology counsellor

[Gleedy]

I had my last chemo today. 19 visits to the unit, with a break in between taking 8 days in hospital for major surgery. Lots happened from start to finish with the usual suffering of horrible side effects and an ambulance at my house once for chest pains. I think on the whole I've been positive and upbeat. So I was taken completely by surprise when I completely lost it at the unit today with a wonderful nurse. I was suddenly overwhelmed by what I had been through and chemo was at last stopping. Had the nurse in tears too. I admitted to the nurse that I never tell anyone what I am really feeling. Don't want to bore friends and don't want to burden and worry family. The nurse strongly recommended I see the oncology counsellors and has given me their number. I'm from a stiff upper lip family and don't do 'therapy' but I felt a sense of relief that I could off load to someone. Anyway all this waffle is leading to has anyone used this service and was it helpful? I'd appreciate your experiences. By the way it's the middle of the night but I'm feeling OK again. Tracey

[Rosewall101]

Dear Tracey, I hope you managed to rest after posting. Well done to reach the last chemo. I had chemo 5 on Tuesday so we're probably both feeling a little rubbish today.

I wanted to post my thoughts on seeing an oncology counsellor. I'm a bit 'stiff up a lip' too. When I feel awful I go to ground and hide away and when better, try to put a brave face on it. It's mainly because I have young children and need help with them that I have had to be honest and admit to struggling and needing help.

I tried to see a psychologist at the hospital but they were so busy and it was too difficult to schedule. But I talked to her on the phone and we agreed that when I'd had my last treatment and if I found myself struggling I would call back.

When I had breast cancer 10 years ago I saw a wonderful counsellor. It made me reevaluate my views on talking therapy. I'd wondered how it could help me and yet it did. Strangely i'd fixated on some neighbourhood problems and rather than talk or think about cancer I discussed these issues. The counsellor was brilliant and let me talk and then helped me see what I was doing...

I'm pretty certain I'll see someone this time too as I need to talk about my fears of the cancer returning (something my husband won't accept) and friends can't talk about. I'll need to talk about how my body fails at repairing itself and my rubbish genetic inheritance (that I may have past onto my kids) and also intimate questions about my relationship with my husband.

I don't think waiting till the end of treatment is a bad time to go Tracey. I really think you should consider and go along for a few sessions to see if it helps. You've been through so much and our minds and emotions get pushed to the side. We're all about how we feel physically and when our next appointment/ treatment will be. I think this counselling helps put us back in balance.

Sorry if this is long and rambling. Chemo brain for sure this morning and more horrible steroids to take.

Love, T. X

[Gleedy in reply to Rosewall101]

Thank you. I'm going to call later xx

[AlisonBoyd]

I live in the Netherlands and wasn't offered counselling, but I did see a psychologist for several months after I finished chemo. I had never had any kind of therapy before, but found it extremely useful having a neutral person to listen to me. It also helped me recognise my own strengths which felt positive.

[Gleedy in reply to AlisonBoyd]

Thank you x

[27-359]

Hi Tracey, I have used marriage counselling in the past, and must believe in it as I was impressed enough to train to be a counsellor, although I have never practiced.

I would say go for it. It is good to have someone who is not close to you and who is unaffected by your situation to throw everything at. I believe that suppressed emotions can go on dragging g us down, and the counsellor might be able to show you a way of viewing everything from a different view point.

If you do it let us know how you get on.

Jenny

[Gleedy in reply to 27-359]

Thank you and I will do xx

[Hidden]

Morning Tracey. Fantastic post so pleased You have got through it all and can now start to enjoy life again! I can't offer u any help re therapy sorry but I can say I had the same attitude as you and once I finished I skipped out of Christies and fortunately carried on as normal

Good luck with your decision and happy days no chemo woo hoo xxx

[Gleedy in reply to Hidden]

Thank you. If I could cartwheel I would but don't fancy a and e x

[Chamber]

Hi Tracey

Must admit I've never heard of oncology counsellors, so would love to know how you get on.

Well done on getting to the end of chemo.

Take care

Judy xx

[Gleedy in reply to Chamber]

Thank you x

[Tesla_7US]

Tracey, Suppressing your feelings actually releases stress hormones (cortisol) into your body and makes it difficult to heal! STIFF UPPER LIP can make you sick. Go for the counseling so you have a safe person to talk to. You need to be able to express ALL OF YOUR FEARS so that you can reduce the anxiety and enjoy what you HAVE NOW. I was diagnosed 3C OVCA with metastatic peritoneal carcinomatosis from ovarian cancer November 20, 2015. Had 4 months of chemo- carbo taxol, then radical open hysterectomy surgery, then intraperitoneal chemo with cisplatin/taxol (which made me deaf and gave me cataracts but I don't care since I'm still alive to enjoy my family) now just finishing 18 weeks weekly carbo/taxol dose dense chemo. Then I have surgery to repair my temporary colostomy. My CA125 was 756 when diagnosed, went up to about 1156 and has been down to low normal for 5 months. I am planning on a nice long remission. All signs point that way. I've had ambulance rides, multiple complications, missed three chemo days and all the while I'm not keeping a stiff upper lip. Luckily my children are grown and my husband is very easy to talk to about anything. I've spoken to counselors because I don't want to overwhelm my hubby or friends. They all help me, but I know if I told them how many times I was in so much pain (turns out I'm allergic to opiod painkillers) I just wanted to die, they would not have been able to understand. I know this is long, we've all had so many, many mountains to climb. This disease is hideous. But!!!! You can do this!!!!!!! Go talk to that unrelated third party who has no agenda other than to help you find coping strategies that enhance your health. With love for you. Tesla in Seattle

[Gleedy in reply to Tesla_7US]

Wow Tesla. You have been brave. Thank you and I'm going for it. Calling later today. X

[Lorent]

Hi Tracy, I felt very much like yourself my feelings were just knuckle down and get in with it, but on my second cycle my nurse talked me into going to see their counsellor, I have to say it was really therapeutic, I have booked to see her again, which I have really surprised myself, it is worth you giving it a try! Wishing you all the very best

Take care

L x

[Gleedy in reply to Lorent]

Thank you x

[Hidden]

Hi Tracey I am so pleased for you that you have had your last chemo. I can only imagine at the moment how that feels only just having my first one last week.

What a long journey you have been on and I imagine a lot of feelings.

Like you I don't talk to anyone about how I feel as don't want family and friends to worry. I just say the usual 'I'm doing OK '.

My sister is probably the only person who knows me well enough when she visits to know I'm not fine. But I feel that if I told everyone the truth no one would visit or call !!

If anyone comes round or I go out I make sure I'm washed dressed and looking as well as I can. I come out with cheery voice and try and pretend all is normal. I gloss over any side effects or pain and try and talk about anything but OC.

I think I do this for myself too. I need to try and be as normal as possible and pretend that this OC is not going to ruin my life !

But why do we do it. To make the others feel better?

Like you I haven't really met anyone that I feel I could talk to. The cancer nurse is all about the practical side of it. The oncologist too. Chemo nurses are so incredibly busy. I haven't yet met anyone else who has or has had OC.

I really am interested in how you get on with a counsellor. I really hope it helps you in any way it can.

I hope you managed some sleep last night and that the next few weeks are manageable for you. You are nearly there. You should be incrdibly proud of the journey you have been on.

Big hug.

Sarah x

[Gleedy in reply to Hidden]

Thank you xx

[Gleedy]

Thank you for your lovely reply. I'm going to give it a go. How can it be a sign of weakness after what we cope with xx I'll let you know how it goes

[lesleysage]

Dear Gleedy, your use of 'weakness' brought home to me that my turning point was when I realised that only when I accept my vulnerabilities can I properly see my strengths.

If a counsellor helps you start and maintain that quiet inner process for yourself, then the world does only see/experience 'the strong you' they are comfy to live with. You, I and everyone else here knows what a lot of work goes on inside in order to give this out to the world...an ex-employee of mine described this as my 'swan tactic' - look serene on the surface, am paddling like hell under the water and fight furiously to defend what I love...my life to share with those whose company nourishes me, is joyful, sometimes challenging and fun. Warmest of good luck. Lesley

[Gleedy in reply to lesleysage]

Thank you x

[Katiebairdie]

What a coincidence that I have logged on this morning. I have just finished my second lot of chemo on Monday, carboplatin and calyx this time. Been feeling awful for two days. Like a lot of you i don't tell people how I really feel, they can see when I'm in pain or being sick but they have no idea what mental stress I'm going through. Today I have decided I will not fight this little horror anymore, I will probably think differently next week. I haven't heard anything about counselling before, sounds like a good idea. I don't know where to start but I will have a look around straight away. Good to know I'm not alone or slightly mad.

[Gleedy in reply to Katiebairdie]

Ring your nearest macmillan centre. They will have contacts for sure. Keep strong. We all have those days xx

[Lily-Anne]

I think have some therapy is a great idea. We run a therapy centre, there is also an acupuncturist and psychotherapist on site. It isn't for everyone, but worth a go. Many people benefit from counselling and therapeutic interventions.

LA xx

[Gleedy]

Thank you xx

[Sunfleury-UK]

Hi Tracey,

Good luck, it sounds like you've decided to go ahead and explore the option of oncology counselling which is to me definitely a sign of your considerable strength! It can seem like a big step but it is just giving yourself the opportunity to see what other resources and support is out there and the first couple of meetings will give you a chance to meet a counseller and also to see which areas they might be able to support you with. It's a very equal relationship and you won't be forced into doing or saying anything.

I had an incredibly positive experience with oncology psychology and would always encourage women to ask about it with their CNS, Macmillan Centre or Maggie's whether or not they go ahead and request an initial meeting or simply keep the details for a point in the future. I asked for a referral after my op, mainly because of direct consequences of the treatment on our hopes for a family. At the time, I was very much in 'strength and coping' mode, putting one foot in front of the other and it was more about seeing what support there might be if / when the emotional consequences hit. Through my previous work, I knew that sometimes a particular counseller was right for one person but not at all for another.... I do though think that oncology psycology and counselling is something very different to the more general range since it starts with the considerable and known impact this disease and its treatments can and will have as well as recognising everything that is needed to get through them.

My experience was that the psychologist helped me to realise (remember?) and use my strengths, whilst also importantly for me, I had a opportunity to voice exactly what I felt at each point without fear of upsetting someone, taking up their time or worrying about what they might think. It was an incredibly helpful thing as once said, the thoughts (especially the ones I never said out loud!) became much less significant once they were voiced and considered. His experience and knowledge also meant that I came to realise that a lot of what was going on was incredibly common for many with a cancer diagnosis and along with that, there were specific things which would be useful. I learned a lot, mostly though he reminded me of who I was and what I could do and so it became the one medical appointment not about the cancer!!

I know that provision of these services is patchy, but I really would encourage anyone vaguely considering it, to ask... Sometimes, sadly, you have to shout a little bit BUT these services are out there! It doesn't mean that you're not coping brilliantly already by finding out more and if you decide that this time is not the right time for you then you've got the information in case things change.... (& if necessary, don't forget, you can also ask for an alternative!!)

Wishing you strength and hope, Sxx

I've often shared this link by Dr Peter Harvey (Oncology psychologist) which focuses specifically on how for many the emotional impacts are not felt until the end of treatment and can definitely recommend it..

cancercounselling.org.uk/Pe...

[Gleedy in reply to Sunfleury-UK]

Thank you for your very informative reply. It's be very helpful. I think part of the melt down is, as a lot of ladies have said, you feel like a safety blanket has been removedited when chemo finishes. I'm not seeing anyone till 29 Sept so feel I've been left hanging. Anyway I've rang and left a message. Hopefully not too long a waiting list . X

[Sunfleury-UK in reply to Gleedy]

It's great that you've gone ahead and started the process- I'm sorry it seems there may be such a delay but perhaps as you've followed it up there may be a cancellation?? It might be worth seeing if there's anything else available in the meantime: a lot of Macmillan Centres now run short 'courses' specifically for this tricky time and Maggies' centres will also have similarly useful events. I went on a short residential 'Living Well' course at Penny Brohn in Bristol which was brilliant (it's free!) and a great place to pause, try out some things that might help and really helped me to 'recover'. Also worth seeing if there's a Target 'Together Day' in your area as although just a day, it's a lovely opportunity to meet others in similar situations.

Do be gentle to yourself in the meantime and hopefully plan some simple treats, you've done great things in getting to this point, very best wishes Sx

[Gleedy in reply to Sunfleury-UK]

Thank you xx

[HogwartsDK]

Tracey,

Just a quick one to say well done on finishing Chemo and good luck with everything!

Dx

[Gleedy in reply to HogwartsDK]

Thank you x

[IrishMollyO]

Hi Tracey

I have my appointment with my counsellor in an hour and I can't recommend a service like this highly enough. I haven't had half the trauma you have been through and I definitely could not have done without that very special boost. Please go for it. You will not regret it. A trouble shared is definitely a trouble halved. Take care.

XXX

[Gleedy in reply to IrishMollyO]

Thank you so much x

[IrishMollyO in reply to Gleedy]

Hi Tracey

I forgot to say today that there is really one major thing that happens when chemo is finished. It happens to most people and I certainly remember it from 5 years ago. While you are on treatment you are used to nurses, doctors , family and friends all looking after you with lots of TLC. Then your treatment finishes and all your support systems fall away. You won't be back for an appointment for at least 3 months. Your family look at you and say to themselves " she's fine and back to normal " . Your friends may pretend it never happened and you are looking well.,. Only we can tell them how it really is but we never do. This is where a really good psychologist comes in., They have heard it all before., I hope this makes some sense . Take Care.

XXX

[Gleedy]

A big thank you to everyone who has replied. Funny how our moods swing. I feel quite differently today. Not tearful and proud of finishing treatment. That said I have made the phone call and I will see it through. Xx

[minard]

Good - you're feeling better and you made that call! I think everyone's responses above said it all. From personal experience, I'd have no doubt at all that counselling support makes a big difference. All the very best, Tracey.

Caroline x

[wendydee]

Dear Tracey,

I just wanted to wish you all the best with your counselling. It definitely is worth exploring. The advice from so many people on here is excellent. I saw, from an earlier post, that you're in the Southend Hospital area. We have a great support group, COPES, in the hospital there, unfortunately it's not that soon, we just had a coffee morning, last Saturday. It's run by a group of patients, with involvement from the CNS team, the Gynae oncology consultant team and the care assistant team, there is always a CNS at our coffee mornings for informal consultations. There's often some complimentary therapeutic input too. It's on the first Saturday of the month, in the Women's Centre of the hospital, round the back, near the MacAdden Centre. We had three new members last week and two the time before. They all left with big smiles on their faces, having not been at all sure about whether to come along.

It's for all Gynae oncology patients, some of whom come with a friend or family member for their first couple of meetings. I'm the chair of COPES, having had OC about 14 years ago. Maybe you'd like to have a look at our website copescharity.co.uk. There's a Facebook link on there too, where you can see some pictures which maybe give a flavour of the group. We do a very positive line in support, brilliant cakes, loads of fun outings, delicious cakes and a sympathetic ear when it's needed.....all for free. It would be lovely to meet you. Our next coffee morning is Saturday Sept 3rd Sept,mgrom 10.00!to 12.30 ish. It's on drop in basis so you can just pop in and say hello, it would be lovely to see you.

Love Wendy xx

[Gleedy in reply to wendydee]

Hi Wendy. I put the last meet up on my calendar after we last communicated but I was in Surrey that weekend. I've put the September one on my calendar. I will be at the next one. Thank you for all your advice. X

[wendydee in reply to Gleedy]

We hope to say hello then. Take care of yourself.

Love Wendy xx

[Dollysmum]

Hi Tracey,

Delighted you've completed chemo. Yes do go for counselling, absolutely. You've been through hellfire and come out the other end, the dawning of which is quite terrifying. Talking it out is sensible and you will feel so much better for it.

You have reminded me to re establish contact with my psychologist - I've had two sessions thus far but the logistics of fitting him in with blood tests and delayed chemo's was counter productive. But really, it does help to work through your feelings with someone. So bin the stiff upper lip right now missus. 😎

Debs xxx

[Gleedy in reply to Dollysmum]

Lips now relaxed and ice made that call xx thank you xx

[Caroles1]

Oh goodness Tracey,

That sounds like me! Take any help you can get, don't be stiff upper lip, I am 18 months after finishing chemo and I had a meltdown tonight.Dont get me wrong 99% of the time I am fine, but I get frustrated if I can't do what I used to do and it involved a new phone, probably down to age.

Don't ever worry about getting emotional,it's life, glad you feel better,but get help if you need it and talk to us we've been through it

Carolexx

[Gleedy in reply to Caroles1]

Got to live a good melt down. Once the non stop crying has calmed always feel a bit better. The day of meltdowns though anything can set you off again x

[Caroles1]

I think it's always better to let it out, it's when you bottle emotions up its not good

Carolexx