First anniversary of surgery

Hi Osboz

Well done on getting to 12 months. I am 9 weeks post APR and on Wednesday I was at the hospital with my wife and I saw the passageway I walked from the pre op to the theatres. Wow, did it bring back some feelings and been unable to shake those feelings although seems to be passing. 

When I was told that all the margins were good after the surgery and I was straight into surveillance, when I shared it everyone (who doesnt have experiece of cancer) said that its was good news (yes it was) and that it was all over (no it isn't). 

I see so many people sharing the same issues as you have shared and I am learning that cancer doesnt just leave physical scars but it can leave some deep emotional ones too that often get overlooked. 

I hope you find your way through these feelings as quick as you can and thank you for sharing as with people like you sharing your experience further down the line I can be comforted that I am not alone with the feelings that may come along. 

Take care

Kev

hi Osboz, you've been through so much - physically, emotionally and psychologically. The trauma you're describing sounds like PTSD to me, not that I'm an expert. Try and hold on to the fact the cancer is gone. Just try and concentrate on getting through one day at a time. Easily said I know - but that helped me. The shock to you mentally and emotionally is massive. I had my first op 11 years ago. You can't forget what happened to you but it should recede with time.

Hi, Osboz that is a very familiar scenario to lots of us, you are not alone. I am hoping the enclosed link might help you, it did me. Take care, and fingers crossed for the scan. Xx

www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

Dear Osboz

I feel for you so much.  I have had cancer x3 but only one major surgery last  November that lasted nine hours,  I was very positive about the surgery as having been so unwell the two months prior and knowing because of previous treatment radiotherapy was not an option, I believed it would literally save my life.  I was told the surgery was risky for me as I have a very suppressed immune system as a long term steroid user (31 years)

My reason for telling you this background is because despite the surgery going well, plus amazing staff and no complications with my healing etc it was the most traumatic three weeks of my life.  I get huge anxiety when I have had to go back to the hospital, and struggl to turn my thought process around.  I have asked for some help to talk to someone about my experience, as though I have amazing supportive family and friends I dont want to be always talking cancer or in anyway to distress them, but feel at times I need to off load.... maybe you could cll McMillan and get a listening ear too?  I have started (yesterday) to write down positive thoughts from that time, I can only think of two atm - the volunteers who played the piano for a couple of hours each afternoon uplifting tunes that I did relax too, also a particularly lovely nurse who worked nights and knowing I love tea and want sleeping would bring me in a cuppa every three hours in night if I was awake...Before yesterday I could not revisit that time at all without feeling panic!  Small steps.

The anniversary is a strange time.  Yes to celebrate but as you found also brings back invasive memories and feelings.  I am sure this is normal, though terribly upsetting.  Think of women who have traumatic childbirth and need counselling and help.... so please be kind to yourself and get all the support you need.  Acknowledge that on day of scan and day of results you will have a poo day, and just do whatever gets you through.  I stay in bed til last minute watching crappy TV then shower and get ready and blast out music in car.  I send a text to friends and family afterwards as they all know that I dont want to speak about the day on the day as am exhausted, even if positive.

Bless you Osboz please keep in touch how you feeling.

Hi Osboz , I really get where you’re coming from . I had my one year scan last September and didn’t realize how much it’s all effected me . It brought back all the scary memories. I had a terrible anxiety atack before I went in .  I went to the dentist the other day and even that triggered a panic attack.  
I’m hoping it gets easier as time goes on .

take care , Nelly x

At the risk of being a Debbie Downer. Unless surgeons know they couldnt remove all local cancer or margins are not good I think they will always tell you they got it all ……. But they can never know for sure.  So I read that as ‘we got it all LOCALLY’ 

I took all the information from my histology reports etc to conclude that yes hopefully they are correct and did get it all but whenever there is a reference to nodal, vascular or nerve invasion however small, yes it may still have been local but there is always the chance something has travelled and the surgeons can never know 100%.  Hence mop up chemo 

so I am grateful my reports give hope it was all removed but I temper that enthusiasm with a degree of reservation that until I see at least 2 years worth of clear scans I will not let my guard down and I will give my chemo every opportunity to do its job. 

I hope your CT scan is clear and hopefully I’ll be in that position in 6mo time too. 

Thank you all for your replies. It's so reassuring to know that others have had similar experiences.

I can so relate to your flashbacks of the walk to theatre, MinionKev, that's one of my most fearful memories!

I did wonder too about whether what I am experiencing amounts to a mild form of PTSD, too, KathH2. I'm getting to a point where I think a bit of help form a counsellor might be the way forward. Like LizzieJo I don't want to keep talking to friends and family. They can't be expected to 'get it' and like you say, it seems to them that it's all done with now. I'm lucky to have an extraordinarily patient partner who listens to me, but I fear it might get a bit much for him too.

Ozzy, I don't assume because I've been told that the cancer is gone that I can rest easy. I too have a sense that the cancer will come knocking again, somewhere/sometime or another. I think that's what any cancer experience leaves you with. It's certainly never gone from one's mind even if it's supposedly gone from one's body. I haven't asked for my histology reports. I rather assumed that without some medical knowledge it wouldn't make a great deal of sense of it and so it wouldn't be of much use to me. You've got me thinking, though....

I find it so useful to share stuff in this space, knowing that somebody will respond with kind words and fellow feeling. So thank you again, all of you that took the trouble to reply and I wish you well in your individual journeys.

Onwards....

Osboz

From an observational point of view I think the body might just heal before the mind does . And for good reason too !

My neighbour is experiencing the same with emergency heart surgery .

Macmillan has teamed up with Bupa for six free counselling sessions . 0808 808 0000 if your interested. 
In terms of recurrence my mum’s last was actually the easiest to deal with in every regard . Nothing like what you have just gone through .

Good for you though for opening up about it and addressing it .

Take care ,

Court 

Hi Ozboz

Next week will be the 2 year anniversary of my total pelvic exenteration, and I just wanted to say that I understand your feelings completely. 

I had counselling, quite a long time after my surgery, through Macmillan when I wasn’t coping too well psychologically and was diagnosed with ptsd. I would thoroughly recommend this and found it very helpful. 

It’s difficult for others to relate to the magnitude of this surgery, and the physical and mental effects of it. I just wanted to say I get it.

Sarah xx

Thanks Court and SarahH21. I will follow up on the counselling - I didn't know about Macmillan's offer, so that sounds like a good place to go as it is more likely to be appropriate for people dealing with cancer in whatever way or stage. Thanks for the suggestion.

I'm glad for you, Sarah, that you are doing well 2 years on. A total pelvic exenteration is even bigger that my op, so I think I can imagine what you had to do to get to where you are - good for you!. Could I just ask something a bit left field? I assume you had surgical reconstruction as I did, so I just wonder, can you sit comfortably now? I still need my doughnut inflatable cushion to feel comfortable. My rear end is so uneven! 

Thanks to you both. Your words are reassuring and so helpful.

Osboz