Starting to feel anxious

Good Morning Shar

I have put a note about this feeling in my journey notes. I completed my 20 fractions of Radiotherapy and bang I rang the bell and it was - see you in 6 months!!

I had gone from appointments and meetings every other week, daily trips to the hospital to - well NOTHING - I have been abandoned!!

Others (thanks Grundo, Freefaller, Stevecam and Shamus47) said just the same - you feel lost - no appointments - nothing and it's very strange and took some getting used to.

I am now on something called Prostate Easy Access Support Service (PEASS). I met my CNS and her assistant. Once they knew I had a good idea where I was with the cancer all I do now is arrange for my last two hormone injections. Arrange my own 6 monthly PSA tests and I am looked at from afar - if I need them give them a call.

I think I am now a Prostate Cancer Orphan - I am in the wilderness!!  .

(but it's a great feeling knowing I am almost there!!). You and your husband will be fine once you get back to being "normal" again!!

Best wishes - Brian.

Yes understand how you feel.  You go from so much action to inaction.  If you have a Maggie's centre near you join them  - they usually have a "Walnut Club" for prostate cancer sufferers and it is good to go and talk to people both men and their wives and partners who are at different stages of their journeys  - its somewhere to go once a week or whenever you can.  Our Maggies Centre ran courses like getting back to fitness after Prostate Cancer Treatment, relaxation courses, and Yoga courses open to both the cancer sufferer and their carers, partners and wives.  We could also go and help tend the vegetable and herb garden there and take home some of the organic produce - wonderful!   At our "Walnut Club" every Wednesday afternoon the men would go off into another room and chat or sometimes talks were given by Macmillan nurses, cancer nurses or cancer charity workers and consultants etc.  the partners, wives carers would go off and have a chat accompanied by coffee and often home made cake someone had brought in.  Once a month one of the professionals at Maggies would also have a chat with the partners just to see how they were getting along and if they needed help with anything from sleep to getting along with their partners to benefits advice.  Its absolutely marvellous.  I found that I got quite quiet and maybe not depressed but deflated about a month or so after the end of radiotherapy.  I just didn't want to go anywhere - not helped by the fact that it was February, March time and weather about as good as it is now.  I got involved with fundraising for Macmillan and Maggies which helped.

Hello Shar.

You are being silly. NO YOU ARE NOT. It is a normal reaction as you feel you are going to be abandoned and having to deal with everything on your own from now on. A PSA test every 12 weeks should be sufficient and don't get too hung up on actual numbers, just trends. If you find that the PSA has gone up a little then ask for an additional PSA a couple of weeks later for reassurance. It is a combination of the hormone therapy and chemotherapy which is going to shrink the cancer and I know your issue is that you would like an MRI or CT scan so that you can physically see what progress has been made but also to see if any mets develop in the future. You are strong enough to fight your corner so when you see the oncologist push this question again. The PSA should be enough as your husband is a secreter. As you know my husband is a non secreting PSA rarity and for various reasons he went a different route of HT plus radiotherapy to the prostate area first but what we found was that it took 18 months for the cancer there to shrink fully. He was then switched on to Enzalutamide from Bicalutamide because the MRI showed that the visceral mets were beginning to grow. The Enzalutamide dealt with these in a year but again the MRI showed that lymph nodes mets were growing so chemotherapy was added into the mix and hubby has just had MRI's and CT scans to see how well it has worked after the 6 sessions. What this is telling us is that you have plenty of options to keep on top of the cancer further down the line if necessary but hopefully your husband's treatment will be sufficient for a long time to come. Just think of your cruises and Cyprus holiday to come next year and I hope you have recovered from the cost of the travel insurance.

Maggie's are fabulous. I go and sit there whilst husband is having his chemo it beats sitting in a hospital corridor or the car for 3 hours. The staff are lovely. I have been trying to encourage hubbie to go to one of the men's groups but he won't. His philosophy is that there is nothing wrong with him. Maybe it is this attitude that has got him through treatment with virtually no side effects. 

Another strange day for me. I can't believe I used to run and manage a large busy department. I now find myself checking and re checking everything at least 2 times. I feel I can't trust anyone else to have done something they said they would without me checking. I read an e mail and then switched the computer off but then had to switch it back on to double check what I had read was correct. What on earth is happening to me? 

Ha - don't worry - I did the washing up last week -I had two milk bottles to put on the door step.

Two minuets later I was upstairs in our bedroom with them. Oh-Er!!

Don't worry - you are NORMAL!!

I'm probably worse than you especially in the early days, printing off or getting copies of all paperwork. Checking re checking. and I had the added complication of changing hospitals twice and getting a second opinion privately.

So.....relax

Steve 

Brian that made me laugh out loud, I can just imagine your face when you realised. 

Hi Shar.

I think we have all been turned into control freaks with a one track mind - prostate cancer. The problem is that we have learnt through experience that the only way to ensure that nothing is forgotten is to do it ourselves whilst our husbands are having treatment. What are you going to do with all your extra time after your husband has finished chemo this week? I hope you have got the celebrations in hand.

Brian I hope you have done the washing up more than just last week

We will be popping down to see his dad in Bournemouth for a few days, so really looking forward to that. Then I might try on some of my long formal gowns for our cruise in march to make sure they fit. Do you think it is too early to start packing