Friday, 2 July 2010

Friday 2nd July-MOAS Five Month Anniversary.

I went for a walk at lunch time today. I've been back to work three weeks and it had been a very busy morning. I'd got into work early to finish my board report, answered the numerous e-mails and telephone calls and done two meetings already. It was now 1 pm and I needed to get out and get some air and clear my head.
As I was walking it dawned on me that exactly five months ago to the day I was in the operating theatre. In fact, I'd been there for six hours already and had another six hours to go. I imagined the scene in the theatre.Today all around me people went about their daily business, whizzing around in their cars, hurrying here and rushing there, just as they would have on that day five months ago. Oblivious to what was happening to people like me up and down the country in the numerous hospitals and operating theatre's. We all take life for granted.

My recovery continues to go well. I was given the all clear by the nurse this week and no longer have to do the twice weekly visits to the surgery to have the stoma closure wound checked. Its healed up nicely.
I have also been given the all clear to start some light exercise. I have started using the exercise bike and intend to slowly increase the time on the bike and the resistance settings. I can also do some light weights to try and re build some of the muscle wastage that was lost whilst in hospital. I have also promised to take the girls swimming in the next couple of weeks. All good cardio and light impact.
I also have been doing plenty of walking in preparation for our fundraising walk up Snowdon and have a 10 mile walk in the Brecon Beacons planned for the 18th July. The fundraising is going very well and we hope to make a sizable donation to Basingstoke and Northampsire Hospital PMP fund.
I still get the odd aches and pains. The area around the stoma site can be tender especially when doing my shoes up. From time to time my lower back will ache and there are other odd niggles from but nothing I cant live with.
I have finally started putting some weight on too which can only be a good sign that the body is starting to recover.
Eating is now pretty much back to normal and my portion size's have increased (I guess that's why the weight is going on, coupled with my reduced exercise routine).
I still get a little more tired than I used to and again that's probably the recovery from the op and the lack of exercise.
Mentally I'm doing OK. There are odd days now when I don't think about the PMP but these are still few and far between. Last week I heard on the forum that one of my fellow PMP sufferers sadly lost his battle with the disease. He was about my age and had a wife and young family and had kept himself fit and healthy. The MOAS had not gone so well and there had been complications yet he battled on for months. The news shook me. I do hear this type of news on the forum occasionally but for some reason this one really got to me. Images of my hallucinations came flooding back to me as clear as when they happened.I felt down for a couple of days. Its so unfair that I could get through this relatively easily and this person should loose their battle.

Tonight I soaked in the bath, relaxing. I looked at my watch it was about 7pm. This time five months ago I was just coming out of theatre and being transferred to the intensive care unit.
I washed and went to get that strange blue fluff out of my belly button and stopped........oh yeah, I aint got one! I smiled to myself.....old habits die hard!


  1. You have been so brave and of course Tracy and the girls. Love to you all Derek & H x

  2. Congrats. My 6 month post-MOAS is in a few days. I should do something special. 6 month checkup is in 2 weeks, maybe I'll wait for the CT scan.

    Keep getting better!


  3. Hi Dan, Doing something special sounds like a good plan. Savour the moment and enjoy. I have always said "you only get out of life what you put in" and that's more true now than ever.
    Good luck with the CT scan, I'm sure all will be fine. I have to wait until October for that. I'm sure its a nerve racking time.
    Keep well,


  4. Hi, an old friend of mine from school days posted me your link as two weeks ago I was diagnosed with cancer of the cervix, and she thought it might help to read your blog. I am just skimming through it quickly now, and will read properly in time, but already I am recognisisng all the feelings and emotions myself and my partner and close ones are now going through. We are only at the start of our journey, and its really great to hear you are making good recovery. Im new to blogs so i hope that you get this message ok, and maybe i will start one of my own too! have to set up an account first, hence I am still anonymous! Thank you for sharing. Love and peace.

  5. Hi Anonymous!
    I'm really sorry to hear about your recent diagnosis. It's really tough to begin with when you are first coming to terms with everything.....all sorts of things go through your mind. However I hope that my blog shows that even though things may seem bleek that you can get through these things. A good positive attitude goes a long way. If I can be of any help along the way please just ask.Good luck with everything, my prayers are with you. Dave

  6. Hi again and thanks for replying. Today I had my ct scan at last and at last also i have a date next week for my mri scan, once they are done and we have results, we can know the BIG picture, which is what have been waiting for. We are praying that the cancer hasnt spread anywhere else. If it is just in the cervix they have discussed with me radiotherapy and a radical hysterectomy. I dont know how succesful this is, as i havent been able to process too much at the moment! It has been the most terrifying time of my life, and feels like our lives will never be the same again. The waiting is awful. Still feels very surreal and yet very real at the same time. I had no hardcore symtons until i was diagnosed and now I have started aching alot and feeling completely exhausted, god knows if that is because I am so stressed and lack of sleep as well, or if it is symptons of the cancer. I have two children, a daughter 9, and a son 17. It tortures me to think that i wouldnt be here for them, really really unbearable. We havent told them yet as we decided to wait for the BIG picture before burdening them. Praying that next week we will have a clearer idea of where we are going with this. Also find it really hard to sleep, trying to train my mind not to think about it, but its impossible, its literally in my face all the time! I wake up and for half a second life is like it was before i knew i had cancer, then the horrible reality hits me and feels my stomach with dread. Im sure once we know whats happening i will feel a bit better but i am quickly realising this is a very up and down journey. It helps to read your story, and gives strength, I know how important it is to try and stay positive, even though at times it feels hopeless and terrifying. Love and peace. Still havent sorted out that profile yet, have been having panics trying to sort out all my little nick nacks and paperwork incase anything happens to me!

  7. Hi, The worst time for me was when I was first diagnosed. I think the consultants always give you the bleekest picture and then anything that happens after that is either not a shock or is better news. Personally I found the meetings started to become a bit more positive once we knew what we were dealing with and what the plan of action might be.
    I found that I took quite some time to internalise things and come to terms with what was happening to me. I started to use some herbal sleeping tablets on a night to help me drop off and when I needed them then later on as my big op approached I saw my GP to get something a little stronger as I felt it was important to go into the operation as well rested as possible to give the body the best chance.
    I know exactly how you feel regarding the children, I felt exactly the same.Initially we said nothing until we knew exactly what was going on and then we told them pretty much everything. Kids are not stupid and they can sense that things are wrong and its important that they understand whats going on. Macmillan gave us a book that we could sit and read with the children that explained everything that might happen when either mum or dad has cancer. It was very tough to do but worth it. I can give you the name of the book if you are interested.
    Here in Bristol MacMillan are working with the Citizens Advice Bureau to advise cancer patients. We met with them at Southmead Hospital and were assigned a case worker. Whilst I wasnt legable for any benifits they did give me a medical exemption card for prescriptions and gave us the book mentioned above and advice where required. The meeting was useful and it was reassuring to know that you had a contact there if you needed it.

    I hope that things go well for you and will be thinking of you. I found the PMP forum very useful to talk with other people in my predicament. You may find the Daily Strength site in the useful links section above useful as they have different forum's for different forms of cancer.
    If you have any more questions or feel I might be able to help in any way then please just ask, even if you just want to "talk" and get things off your chest. I'd be happy to help.
    Best wishes,

  8. Thank you again for taking the time to write back.. yes i will never forget the day the consultant told us, even though i was kind of expecting it, it still was a shock, and i cried on and off for days afterwards. It feels like we are going through all that again now, as we wait for the mri and the results of that. Im really scared. Im being treated at st michaels and so far the team have been great, if i ring to chase things they are very on the ball at getting back to me, and i had a call today to say that my big operation is booked in for 27th july, but this is all provisional, and will depend on if the mri shows that it is just contained in the cervix and hasnt spread. I just want to get it over with. Tonight we told my daughter, 9, we told her that mummy isnt well and needs an operation on her tummy and that i would be in hospital for a while. we would of waited until wednesday when we get the big picture incase it is worse, but when i got the call to say i will be operated on the week after (providing mri is clear everywhere else, we decided that we had best start approaching it now, as it all seems to be happening quite quickly. I then told my son who is much older, 17, the same story, but i think he will have to know the truth soon, as he is asking many more questions that are harder to fob off an older child. i.e. what is wrong with your tummy, why are they operating on you, how long have you been ill. It was very very hard to answer these questions without mentioning cancer, and also to remain composed while talking to him, as i want to be strong for him. Please do send me the info for Macmillan, we too were also recommended them by st michaels, and they gave us alot of information from them, some of which i have found difficult to read because alot of the time i dont feel emotionally stable enough to take in and process that i actually have cancer, and it is serious, it might not be treatable, i might die, all of those things running through my head when i start to read up information. There is so much information on the web it is overwhelming at times. I am now getting stressed about the operation, even though i want it done and over with, the thought of being "out" for quite a few hours freaks me out and worries me! even though i am sure many many people have been through this! And worse, the thought of going through all this and it not been succesful. Well i guess that is the horrible stark reality of cancer, once you are diagnosed life is never the same again, nothing is for certain, you never feel free from it again (or do you?) even after treatment if it is succesful. I feel i will always be on a silent alert, wondering if it will return. I know this is very negative and doesnt help my mental and emotional state, but i cant help but think these things! Thank you again for writing, we are counting down the days til wednesday now, and praying that it will be the best news we can hope for. Love and peace.

  9. Dear Anonymous (from another anonymous).
    Back in October, I went in for a “normal” physical exam and came out on a rollercoaster of fear and questions. For awhile they thought it was ovarian cancer, but after lots of tests and a few meltdowns on my part (I hate how some in the medical profession just get you on this conveyor belt and you feel powerless), I finally was correctly diagnosed with PMP. And, blessedly, I was sent to a surgeon who is the most fierce, passionate woman I have ever met. I am older than you, but I have grandchildren who I really want to see grow up! I also am a teacher, and I dearly loved my students -- some had seen a lot of death and trauma already in their lives, and I wanted to approach my disease in a manner that would somehow benefit them. So I was really honest and matter-of-fact with everyone (don’t worry about scaring people with the word “cancer” -- your true friends will be apparent after they hear that word, and some will totally run away -- that’s okay). It really helps to tell more people instead of keeping it bottled up. Plus, I felt as though I could be a model for my students, to show them the reality of life and death -- they will all have to face it someday, and if I could do it with a shred of grace, maybe they could to. So if had one of those overwhelming moments when I felt scared, I’d tell them. I’d also tell them about the amazing love I received from people. Plus, I was so so busy once they made the appointment for the operation that I didn’t even have time to get as scared as I should have been (I didn’t read up on my condition till after I was sure I would recover!). The key for me was having a surgeon who I trusted implicitly -- there were days when her passion for keeping me alive was greater than my own, and I could draw from that. You are right -- you will always be a cancer survivor, but I have found it to be a blessing. Life is sweet, and you will taste that sweetness in a way that others seemingly ignore. So I have some hot flashes -- it proves I’m alive! So I feel unutterably tired -- it proves I’m alive. Love is what is important; gather those you love around you and let them give you strength.
    God be with you -- it’s a hard journey, but you can find your way.

  10. You guys are going to have to get yourselves a profile going on as this could get mighty confusing!!
    So I hope you dont mind but I'm going to call you anon no 1 and anon no 2 for now!
    Anon no 1- I just wanted to say that Tracey and I are both thinking of you and we wish you the best with everything. I found that my girls were fantastic throughout the whole ordeal. Infact you have inspired me to do my next post about how we got the kids through it and the things we did to try and minimise the effect on them. I realise that every one is different and how each family approach their kids will be different but hopefully people will get some ideas from what we did as I have to say my kids did very well. No behaviour problems, school work didnt suffer and they dont seem emotionally scarred by the ordeal. In fact far from it, they took it all in their stride really!
    The books that Macmillan provided us with were as follows-
    When your Mum or Dad has Cancer by Anne Couldrick
    Talking to children about cancer-ISBN1-905384-25-4 from cancerbackup

    Hopefully they will be of use to you. My Kids are 10 and 13 and we sat and read the first book together. It was very hard and we all cried quite a bit but it covered all eventualities and I felt prepared them.
    Funnily I type this I am also talking with Debbie on MSN and just made the connection! Send me a freind request on Facebook if you want and I'll arrange to get them to you if you like! My facebook page is on the useful links above!

    Hi Anon no 2! How are things going? From your post you sound really well and I really hope that is the case. I have to say that I took a similar approach to you and have been very public about what I have been going through and shared all my thoughts and feelings with everyone. We were of course sensible with the kids and were careful what we said but we were completely honest so if the worst happened they were prepared.
    Its really good that we can have these conversations and share our experiences on line. I really am pleased that you have chosen to make comments on my blog and I hope that other too can join in conversations and get something from our discussions.
    peace and love to you both.


  11. Tomorrow's my sixth month anniversary : ) I'm just waiting for a note from my doctor to get the six month CT-scan. (I'm a little more anxious than I thought I'd be, but I'm holding it together.) My scar is still a bit numb and I notice that I am still a tiny bit hunched over, but other than that I feel great. My husband and I climbed a very small mountain a few weeks ago (one I used to scoff at), but it was just the right size for us! I kept reminding myself how hard it had been to crawl out of bed and walk to the bathroom just five months ago -- at that time I didn't dare even dream about climbing mountains again. So yeah, I'm doing well : )
    take care, anon2

  12. Anon number one again, i really will try and get that profile sorted, things seem to be moving quickly and i have little headspace at the mo! I thank you Dave, and Anon 2 for replying to my comments.. as the time for my operation draws near, (next week) i am feeling more and more nervous, my mind bombarding me with worries. However, another big day for us comes tomorrow, when we are having a meeting to discuss the results of my recent scans and mri. This is the day I have been dreading. I have never ever felt "dread" like I have felt it since this began. A terrible heavy weight in my gut, over and over again. I am praying that we get the news we are hoping for, which is that the cancer has not spread. That is the best we can hope for. Anything else will feel like a terrible blow on top of what we are already trying to deal with. Dave, thank you so much for your advice on the children, it is one of the hardest and most cruelest parts for me, as i said, both kids know I am ill and need a serious operation, they are both aware that i may be ill for sometime. I have questioned over and over whether i need to use the word cancer to my children, and because of the nature of the disease, nothing is for certain, therefore i feel i would be cheating them not to tell them what it is and at the same time i dont want to terrify them. most advice I am getting tells me to tell them the whole truth as we know it. Dave, I am definetely going to try and get assigned a macmillan nurse, their site and booklets are very informative and it looks like they give alot of support. Thank you both again and i will post you how the meeting goes.

  13. Thinking of you and your family and praying that the cancer has not spread.
    anon 2

  14. Hi Julianne,
    You dont have to thank me for anything. Its my pleasure, anything that I can do to help you and your family get through this however small, even if it is just someone to talk to in cyberspace.
    I have sent you the details of the Macmillan/ Citizens advice bureau on facebook and also the details on the booklets that they gave us. I hope they are of use.

    Please let us know how things go.

  15. Dear Anon 2, and Dave,
    We were blessed on wednesday to have the best new we could of hoped for and were told that the cancer doesnt appear to be anywhere else, and therefore the operation will go ahead Tues 27th july. I was estatic and so so relieved, I had convinced myself that it must of spead. So, the operation goes ahead in two days, as I am writing this on sunday eve. I am so nervous, I hate the thought of being under a general, as I have never had one before, but I have to say Dave, this is the bit where I really draw strength from your story, when I read about the major surgery you went through and how terrifying the lead up to that must of been, it helps me to know that if you can do that, then i can surely cope with a few hours under! I cant imagine how nervous and worried you must of been... I know my operation is a pretty routine one, and it should all be fine. I just want it done and over, again its the waiting that makes it worse. Thank you again for all your replies, it has really helped, i will write again before tuesday if i have time or energy! If not then I will post you when I am back at home, I am told 8 days in hospital max. Peace and love to all.

  16. Woo hoo!!!! Great news. I had never had surgery before my MOAS, so I had no idea what to expect. Just let all the people who start poking you and inserting weird things into you know you are clueless, and they will take care of you : ) After the surgery, do everything your surgeon tells you, even if it hurts! The sooner you are up and walking around, the better. Cough to get the anesthesia out of your system. Be sparing with the pain-killers -- they gave me weird dreams and didn't really help that much. Tell your husband and kids the things the important things they need to hear, and go into the operation as peacefully as possible. I'll be thinking of you on Tuesday : )
    Anon 2