A return to normal please!

User

Posted 30 May 2018 at 12:45

My recent cancer treatment is flinging enormous emotional changes in my face. One moment I feel quite positive and bright -the next i feel seriously down, angry and alone.

Last week I had my follow up appointment with consultant surgeon following robotic prostatectomy in april. Good meeting -no immediate treatment necessary--and an expected date for a follow up blood test(PSA) in july .Consultant expects a near negative figure--as of course do I and i remain positive.

This was good news, but I felt neither triumphant nor relieved--just quite pleased i didn't have to go down the dreary radiotherapy route of a (very logistically inconvenient) drive to a hospital for daily treatment for a month .

My issue is that I feel my wife, son, daughter and their partners are now putting me under pressure to be OVER positive. I love my family dearly and in the last few weeks and months their interest, care and love has been exemplary. I can cope with the realism that cancer is never totally cured and you always have to keep a watch. I can also cope with adopting to a changed lifestyle of being at home more often and adjusting to new circumstances. What I now long for is a quiet few weeks or months to come to terms with these big health changes, gather my strength and recover from my recent treatments. Yes-I feel I'm damaged goods and it has been a shock. The op itself--whilst successful, was a traumatic experience with a difficult initial recovery period. It left me( and my wife) exhausted and emotionally drained. Naturally-she wants a holiday, a trip abroad and a real break. I just want a quiet time.

I am being encouraged to "join in" and "celebrate" but quite frankly-what I really want is -a return to normal.

User

Posted 30 May 2018 at 14:18

Ah lovey - nearly 10 years on, I still wish we could just go back to how it was before .... not 'back to normal' though, this is your new normal. I would be intensely irritated by someone wanting to celebrate; have you gently pointed out that getting cancer and having manly bits removed doesn't really feel like something to celebrate? Do your loved ones understand the full ramifications of your treatment, possible recurrence etc and are wanting to gloss over it or do they not understand. Have you tried to protect them a bit too much?

Macmillan do a great leaflet about the emotional impact of being diagnosed with cancer, especially the terrible down that some people experience once treatment is finished - it is all about adrenaline and fight / flight. While you were being diagnosed, choosing treatment, recovering from treatment, tc your head was filled with stuff to do. Now ... nothing. Grief / what hit me / why me / what next are all common feelings.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 May 2018 at 12:45

My recent cancer treatment is flinging enormous emotional changes in my face. One moment I feel quite positive and bright -the next i feel seriously down, angry and alone.

I am being encouraged to "join in" and "celebrate" but quite frankly-what I really want is -a return to normal.

User

Posted 30 May 2018 at 15:22

What lovely replies and such genuine thoughts.

Most of the time I feel great and have lots to plan and do--but at the moment short of wearing a "I'm not through this YET" T shirt I suppose I will just have to get used to people's reactions.

Some years ago I met a friend for lunch who had just gone through horrible cancer treatments--I just couldn't think of the right thing to say except " It must be really tough coming to terms with such a massive amount of change..." .....from the reaction and the conversation we had afterwards- I sort of sensed that this was the right thing to say.

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User

Posted 30 May 2018 at 14:18

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 May 2018 at 14:41

I think that most of us can relate to how you are feeling at the moment but it's early days yet. In a way I was lucky as we have no children and so did not have any additional pressures and my wife understood that we had to work out what our 'new normal ' would be like.

There is the recovery from the trauma of the operation to get through and that really needs to be done at your pace but lurking in the background is the fact that you need the results of the PSA test to help verify your post op situation.

With me the PSA test resulted in eventual salvage RT but I was probably in the minority. The thong that helped us was talking to each other and being honest about how we felt so that we could forge ahead at the best pace for us both. The promise of a holiday as a Thank You to my wife allowed me time to get over the op while we both worked on the holiday plan. In the meantime we enjoyed days out and just being together.

We are all different and deal with these things in our own ways but we have embraced our new normal and having done that, there is no looking back and no regrets.

All the best to you and your family.

Kevan

User

Posted 30 May 2018 at 15:22

What lovely replies and such genuine thoughts.

Most of the time I feel great and have lots to plan and do--but at the moment short of wearing a "I'm not through this YET" T shirt I suppose I will just have to get used to people's reactions.

User

Posted 30 May 2018 at 17:06

Completely understand your feelings. I posted a variation on this theme a week or so ago. In short I think it's a question of people wanting to move on before you, yourself, are ready. There's a whole area around how people react to loved ones and friends who have cancer. Possibly an area that needs more attention. Grief and shock are normal but over positivity or wishing to put the whole issue to bed as it were can strike the wrong note.

Important, I think, that you do communicate your feelings honestly but this isn't always easy. I know from experience.

User

Posted 06 Sep 2018 at 15:03

Hi there...me again with an update .....summer has passed and a month ago a very positive and low PSA. A further clinic appointment is scheduled for next month which i am looking forward to.

I wanted a "return to normal" but on reflection perhaps I should have titled my original post-"I want a quiet time". My recovery from the op was long and hard, a stubborn urine infection took a month to shift and the world felt thoroughly foul. However, the amazing weather in july with long sunny afternoons and evenings in the garden I will never forget. The occasional day out and a brief 4 day UK trip to Gloucestershire was fun and helped build confidence. A week's planned holiday to the Med next week--and my first airport experience for a year!...strategic loo planning is underway!

If i may pass on the one BIG peace of advice for anybody going for this op it is this--be prepared for a 3 MONTH recovery, do not attempt to hurry it, rest when you can, say "no" and mean it if you don't feel like doing something...but but but,,,,extraordinarily enough and almost to the day-YOU WILL BEGIN TO feel so much better after 3 months but YOU WILL ALSO adapt quicker....I ordered some more pads --then decided I would do without them---as far as possible they sit there in the cupboard.!. My GP said-" as well as than pelvic floor stuff--better to deliberately try and delay your loo visits for an extra 5 minutes every day?"--excellent advice --for me!

No-It's not exactly fun planning life around how much liquid to consume and when and where the nearest loo might be--but amazingly one gets used to it.

Can't do theatres and cinemas yet. Believe you me- there is no fun in sitting through a "so so" production wondering when i will need to squeeze past my neighbour for quick trip to the gents and the inconvenience of squeezing back in again afterwards!....perhaps worst of all , although they mean to be kind, friends are not being kind when they quietly say afterwards " were you alright going out in the middle". So--for the moment I am declining theatres/cinemas--but I will return as and when....

Family and loved ones were marvellous--but they were even better when they let me recover at my own pace, controlling what I could control. I have spoken to them quietly and confidently about it and I know they understand. I don't think i was a very nice person in the spring after the op. I have apologised to them and thanked them for their love and support.

As the future--let's just see....for the moment I have learned lots-hence this note....

Best wishes to all

User

Posted 06 Sep 2018 at 15:14

Excellent advice, Dogfuzz. I don't think people who haven't personally been involved in this kind of stuff realise that the op is often just the beginning of the process, rather than something to "celebrate". I had my left kidney removed this last Saturday to get rid of kidney cancer. Am I happy that the cancer is (hopefully) permanently sorted? Yes, of course. Am I going to celebrate? No, because I now face at least two months of a bloody painful recovery process from surgery and I really don't want people telling me how pleased I should be about that.

I just want people to leave me alone and let me recover in peace and quiet at my own pace!

Cheers,

Chris

User

Posted 19 Sep 2018 at 14:43

update update-oops-oh dear -I made a mistake. With an approaching birthday next month (mine!) my family asked me whether I would like a special evening out and a visit to the theatre.Not wishing to be a party pooper-I said "yes lovely" and left it like that. Yesterday, we needed to make a commitment for the number of tickets needed and I found myself going cool on the idea. Lovely to be going out with the family, but since play is not to my taste( or choice!) ,I know I will begin to feel stressed, want to go the loo( once or thrice) in the performance, then upset my self and family.So-decided to change my mind but ----kappow----that led to a heated cross examination and "why did you not say so earlier " conversation. Upsetting for me and i guess upsetting for others too.

Outcome- I felt i was letting everyone down...,but hey ho!.... in future I'm going to be ultra polite &loving and quickly just "say no" if it happens again.

Anyone else been through this sort of scenario?

User

Posted 19 Sep 2018 at 22:11

After sixty odd years of being in control of our bladders I am sure we can be forgiven for a lack of confidence. After 22 years of going abroad for holidays I have not a holiday abroad since my surgery. Have you considered trying the Conveen sheaths for those special occasions ? I lost my continence after a dilatation and RT, I have a SPC so being out and about is easy I just open the tap. Politely saying no every time could lead to never going out so try to find a solution if you can.

Best wishes.

Thanks Chris

User

Posted 20 Sep 2018 at 14:36

I understand exactly how you feel DF. I have arranged more than a couple of days out, visits etc and felt quite excited about them at the time, but when the day comes around, I find I am really nervous about it, but for no particular reason. A few of those times, I have cancelled at the last minute, but on the others, where I have forced myself to overcome the nervousness and gone ahead with the planned outing, I have found that I thoroughly enjoyed it.

I have an excellent loving family too. They really care and look after me well. They really believe they are helping when they suggest a day or evening out, but as you say, it does put pressure on us to go along with it because we don't want to let the family down.

I have been lucky in recent months, because I have been on a long treatment holiday and whilst that has caused its own problems, it has given me a little bit of enthusiasm for doing things. But now I have started a new treatment and I am beginning to feel I need to be left alone a bit more. Trouble is, after a couple of months of going along with these events, I now have to start again to limit the family expectations!

Peter

User

Posted 22 Sep 2018 at 16:40

It feels to me that petergkelly and colwickchris AND myself are developing ways of coping....but it is hard work isn't it!

I no longer wear pads of any kind and i would consider it a failure to resort-unless an emergency ! I can go 2 hrs before a loo visit. But MOST important of all, once the urge even slightly starts that results in stress.....bla bla

Two tales!!

A THEATRE would mean restricting liquid at least an hour or so beforehand, insisting on an end of aisle seat, looking forward to the interval and not exactly welcoming the prospect of a late night 40 minute train home after the show, waiting on a platform etc, then the 15 min drive back home from the station. All this whilst trying to put on a " I am so loving my evening out" face for my friends or family.....

TOP FLYING TIP......An interesting experience earlier this month-I did my first flight since the op. A large cup of tea first thing( no more)-drive to airport, A quick pee by my car in medium stay car park( it was dark!) then dreary bus to terminal ,check in and security, 60 minute wait airside with a snack( no drink), a quick loo before going to the gate with an accompanying bottle of water.....then here is my secret tip. Always always always go to the loo( whether you want to or not!) the moment the seat belt sign has been switched off after take off. If you leave it later--the trolley ladies block the aisle. Leave it later than that and the whole plane wants to go once the snack/meal service has finished... If it's a 2 hour flight--that did it fine for me.......problem managed!

Perhaps I should plan my theatre or cinema trips just as diligently. There is however a difference between an enjoyable evening out being entertained compared to tolerating the comforts, discomforts and inconveniences of budget airline flying!

Onwards and upwards!

User

Posted 24 Sep 2018 at 10:30

It's the world of "wee o'clock! That certain knowledge that at specific times of the day - usually 9-12am, and 9-12pm - bladder emptying takes precedence over all other activities. For me, this has a huge impact on my life. I work as a therapist, which means sitting in a room for an hour at a time. Often results in significant pain during morning appointments, and the occasional leakage which is awkward. In the evenings, I stop drinking at around 9pm as the only way of getting an unbroken (and dry) night's sleep.

Weekends are great! I can drink however much I want, whenever I want. I genuinely celebrate these days! Sadly though, it does mean careful planning for nights out - uncomfortable restaurant chairs that cause leakage, being able to escape tot he toilets at cinemas etc. I just turned down a 3 hour comedy evening, as the inevitability of regular trips just didn't appeal. The new normal...

User

Posted 25 Sep 2018 at 14:39

grahamt,

My world almost exactly....as for the nights, I agree ,no liquid after 21.00-but even so it is not unusual for me to wake twice or even thrice before 07.00 the next morning. Last night though, after a meal with my 2 regular glasses of wine and a large mug of herbal tea-I slept right through to 06.45....oh well!

If this helps--I DO find that a meal tends to hold liquid for longer, whereas anything in the least bit diuretic ( coffee the worst) goes straight through an empty tum. During my convalescence I had a stubborn urine infection needing antibiotics. GP also recommended a daily large glass of cranberry juice which he described as a "good diuretic". So MY 9-12.00 wee o'clock is caused by my morningjuice and my large mug of nescaff!

Dogfuzz

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