Diary of a nobody

Too busy enjoying life but still here!

2013-09-29T20:10:14Z

Chatting to a friend today who wrote a blog during part of her cancer treatment prompted me to come on and read my blog posts for the first time since I wrote them, this made me realise that I had not updated on here for over a year! It's terrible but I always found this blog a great outlet for when I was feeling low and needed to talk, it's a good sign that I have been absent for the last 12 months, I have been busy living and enjoying life! I still have incurable cervical cancer but I finished palliative chemo 11 months ago and I am still stable. I was told in May 2012 that the cancer had spread to the lymph nodes in my pelvis, pelvic aorta, chest and in my shoulder bone and spine. I was given 2 years if I was lucky but told it would be unlikely, I'm holding my own and determined to prove them wrong. I just wanted to come on and reassure anyone who has been diagnosed with mets or recurrence for cervical cancer that the palliative chemo can help and prolong things, for me the lymph nodes have all resolved and the the bones show healing and could well have healed, for how long I will stay stable I have no idea but I am determined to exceed the 2 years! My ileostomy reversal did not work and with finding out that the cancer was now incurable my consultant agreed to a colostomy as soon as my chemo finished. It has allowed me to live life again and I am no longer housebound! My husband took 6 months off work and we have been spending quality time together and touring around Scotland in our caravan with the new addition to our life, our little puppy Angel who came to us in December 2012 and has completed our little family, she is an absolute joy. Since writing my last blog post the support group I had been waiting to start for Jo's Cervical Cancer Trust has launched in Manchester and is a real success with such fabulous ladies attending and supporting one another. I am so proud of this and way back when I was envisaging how I imagined the group would look this is exactly how I imagined it. We are raising awareness, raising funds and so so importantly supporting one another and being part of the group is so special, important and priceless. Lou

Oh happy news!

2012-09-19T09:37:41Z

I am feeling much more positive and thought after my last blog update I should post another as a result. Was in quite a low place when I posted last time. I think hearing news of others losing their battle always affects you and with chemo zapping all my white blood cells, platelets, energy and optimism it left me feeling low, lonely and a bit fed up. Not like me at all so I am glad that after the chemo on the Wednesday I definitely felt more positive and more like me!! Well despite having chemo delayed twice and being admitted into hospital twice since I started this treatment I have receive my latest CT scan results and they were, even if I do say so myself, fab! The 3 lymph nodes have now resolved, radiographer speak for clear and the bones in my shoulder and spine that have cancer in are showing signs of healing which suggests the chemo is getting in there and doing its thing too. I have 2 more cycles of chemo left and so hopefully it will sort out the rest of it and I will be on a level playing field again. Realistically it will come back even if it does clear now but there is always hope that a miracle could happen and I am happy to cling to that for as long as I can. I feel a bit like I let myself down with my last post but to be honest it was how I felt and I needed to release it in some way and felt better for it. So whilst I don't like to admit I felt like that I did and getting it off my chest helped so it served a purpose. That said I do feel so much better for posting this one! Thanks to Court who responded to my last post.

Silent tears , lonely & scared

2012-08-22T14:01:31Z

Not been on here for a while but today felt like I needed a bit of an outlet. Since last coming on one of the ladies who used to blog on here who also had cervical cancer has passed away in July. You may know her she blogged under 'Miss Nutter' her maiden name. Kathy also became a 'virtual' friend and we text each other and kept up to date. The news although not completely unexpected came as a bit of shock and is so sad. I am currently going through chemo for mets and know that I too cannot be cured. I have been mostly dealing with this well considering but today I just feel really sad and very frightened. I feel so frustrated that cancer has done this to me and at 39 I will be taken from my gorgeous husband and family and friends. It is the lack of control over everything. I have had my chemo delayed twice due to low counts on my platelets and white blood cells and although I received the fabulous news that the tumour markers have reduced by 50% I have since been taken off the drug trial I was on due to being too sensitive to it and I am petrified that it was that that caused the shrinkage and the scan that I have in September won't be so good. I lay in the bath before with silent tears just running down my face. No sobbing just tears rolling uncontrollablle. I have only occasionally been upset about this and I know later or tomorrow I will feel better but I am scared. I don't know how I will cope with dying. I don't know really what to expect and I don't want to think about it really. Is anyone else going through this? It feels lonely. My husband truly is the most wonderful person. I love him more than anything and he would be gutted to know I am feeling like this but having cancer can be so lonely sometimes. Although he is always there for me, the first with a cuddle and a kind word living with this diagnosis is hard and despite his love and constant support I still feel alone and scared sometimes. Is that normal? Back at the hospital on Wednesday hopefully for the chemo that was postponed on Monday if my blood count is better. Maybe that will make me feel better.

Operation Seek and Destroy

2012-05-27T19:23:37Z

Starting to feel a bit apprehensive now and the realisation that I am having chemo tomorrow because the cancer is back is beginning to kick in.

Not sure if I can go on the trial yet due to protein in my urine. Always runs with protein in due to urostomy but trial criteria is strict and won't find out until tomorrow if they will allow it. One of the side effects of the trial drug can be protein in your urine. The lovely trial CNS is fighting my corner so we will just have to wait and see. No certainty that even if I am accepted I will be one of the 50% that gets the trial drug so in the words of Doris Day 'Que Sera Sera"!!

I have decided to name this part of my cancer battle operation seek and destroy. I do so hope that the chemo manages to do a magnificent job. The alternative is far too scary to even contemplate and I don't want to fill my head with that possibility only positive thoughts.

To anyone else starting treatment tomorrow and to those still battling, good luck.

xxx

It's back ......

2012-05-20T16:21:21Z

I found out on Tuesday that the cancer has returned. I am gutted.

Had MRI and CT routine although did have lower back ache and dull pains in pelvis. Colerectal surgeon said could be nerve endings due to the pelvic exenteration and if continued would scan me. Then suggested I have routine scan as everyone has been focusing on my bowels due the reversal.

Had MRI April and found out suspicious lymph but could possibly be infection, monitor CT scan. Had to wait a few weeks for that and then that cam back and confirmed cancer. Had appointment on Tuesday and was told now not curable but they would be looking to control it. Cancer in lymph nodes of pelvis and pelvic aorta. Pelvic MDT advised chemo. Went back on Thursday to see what Gynae MDT said and they agreed. Cancer also found in lymph node in chest and possible bone in my spine!

Taxol and Carboplatin treatment 6 cycles over 18 weeks. They have also offered me a place on the CIRRCa Trial that is being run. I am numb.

I did look into cyberknife as already had radiotherapy to the pelvis but I have been advised that even though it is pin point accurate it still has to pass through radiated tissue. I would be interested to speak to anyone who has had cyberknife on a previously radiated area. Anyone who has had or going through the Taxol and Carboplatin and or the trial.

I seem to be in business mode where I am just dealing with and processing facts and no emotion. My husband and I have talked and said we want to remain positive and not spend any of our time crying and getting upset. I hope that I can stay this strong. I feel guilty that he is having to go through this. I am scared at the outcome and I don't want to leave him.

Anyone any advice or suggestions?

Lou x

Lost but not forgotten

2012-04-11T08:11:59Z

One thing you do not get told and is not featured in any booklets you are given when you are diagnosed with cancer is that you will meet wonderful people who wont make it.

I don't think I will ever get used to that.

Sometimes you might only speak to these people via the internet, over the phone or if you are lucky enough face to face but no matter how the relationship is forged you have met a new friend.

Since my diagnosis in June 2010 I have lost 3 people who became friends very quickly and sadly were not as fortunate as me and lost their life to cervical cancer. All were younger than 40 and two of them left behind children. So sad.

My coping mechanism is to remember how lucky I am to still be here and try to make every day count.

Despite the sadness and the feeling of heartbreak for their families that these wonderful ladies lost their fight I would never stop making friends. The joy, support and friendship now matter how short is always worth it.

Lou

Light at the end of the tunnel.......................

2012-03-30T09:33:23Z

It has been a difficult few months since the ileostomy reversal but over the last 2 weeks things have started to improve slightly......hurray!!!

I took some antibiotics that my gynae consultant gave me as he advised that radiotherapy can kill a lot of the good bacteria in your bowel and make some nasty stuff grow. During the treatment I felt like I had gone back to square one but once the treatment finished I have to say things seemed to settle bit. I am still unable to go out unless I don't eat or drink and this then causes pains later on in the evening but I have managed to get out now some mornings which has been bliss. The evenings any time from 4pm onwards are still painful and action filled!!! It's at this time that I still have no control and this can last way into the early hours.

I wanted to post though to say that I have seen an improvement albeit small but I can venture out now which is something I could not have done the last time of posting. Although I felt really low on my last post I am now feeling more like my my normal self.

It's a long old road and I have been told it can take up to 12 months and potentially the reversal might not work ( in terms of controlling urgency) I do think that given time I will get there. I did not think that 4 weeks ago and was discussing the possibility of a colostomy so it just goes to show with a little time and patience ( something I am lacking in!) what progress no matter how slow can be made!

I managed to get to charity awareness day on behalf of Jo's Cervical Cancer Trust in Saturday. This has been my goal since Jan so I was so pleased. I did not eat or drink until 3pm but it was so worth it! We did a raffle and the lady who will be running the Manchester Support Group with me Di Thornton came up with a fab idea called the 'Pink Pledge'. We asked people to sign to pledge that they would speak to 5 friends or relatives and ask them if they have been for their smear. It went down really well. I am so glad that that I made it there, stayed and back all without incident!!

For any ladies that might just stumble across this post and if it applies please please please go for your cervical screening.

I hope to back soon with another positive improvement update but in the mean time I'm off to enjoy the sun!

Down but not out!

2012-02-17T17:59:03Z

Well it has been 6 weeks (yesterday) since I had my ileostomy reversed and currently there is not much change.

Throughout the whole of this cancer experience I have NEVER felt as low or sad as I have at times during this 6 weeks. My poor husband has had to put up with floods of frustrated tears and I have felt really low. Luckily these sessions don't last long but when they are happening it is horrible.

As a rule I tend to get on top of things and chose to be positive and deal with things well but I have been housebound for 6 weeks and can't see me getting out and about any time soon. I was told it was not going to easy but nothing could have prepared me for feeling like this.

Whilst on some days the frequency has lessened there is no rhyme or reason and if I have a good day and tell someone about it the wrath of the God of the ileostomy reversal the following day is bad, apparently he does not like boasting!!

The lowest point so far has been the delivery of nappy type pads, they are all the fashion apparently for 38 year old ladies having just had their ileostomy reversed!!

I have been told by others that things will get better and I am sure that they will.

Mine is by no means the type of experience that everyone would have, my consultant has said due to my previous bowel operation and radiation damage my reversal might not work but I selfishly needed to get this off my chest. If you are reading this ahead of having one please bear my history in mind and don't let my experience put you off.

I hope to be back on here in a few weeks showing off how well things have improved so please cross your fingers for me.

Have a lovely weekend

Lou

It will soon be another anniversary......

2012-01-19T15:01:27Z

2 weeks ago today I was back in the operating theatre having an ileostomy reversal.

The decision to have this done was one of the hardest decisions that I have ever had to make. Strange most people think, that decision should have been a non brainer but that bag began to feel like part of me and in an odd way I was attached to it as it symbolised one of the very reasons that I received an all clear and am still here today.

Initially I could not imagine living my life with two stoma's. I was devastated and every time I contemplated it I felt breathless with panic. There was no choice though, this was the only way I could survive cancer and I was not ready to die.

I need not of worried..

The operation lasted hours and my recovery at first was slow and painful. My urostomy leaked frequently and I thought I would never be able to leave the house again. I feared that the ileostomy would make noises that would prevent me from returning to work from embarrassment and I was so tired. But as the tiredness improved and the leaks reduced thanks to my wonderful stoma nurse and all sorts of adhesive and fastenings I found that life could return to normal. The ileostomy was no problem, occasionally it would murmur which sounded just like my tummy rumbling but it did not prevent me from doing anything.

When I was told in July I could have a reversal I was scared of this next stage. The possible 12 months of bowel problems that could follow. I decided to have the reversal done and after cancelling the September appointment as I had things I wanted to do before I went into hospital.

The past 2 weeks have been hard. Since finding out I had cancer in June 2010 these last 2 weeks have tested me more that anything that has happened in this time.

I think because I made the decision to throw my life back into turmoil it has made it harder to deal with the side effects. I was fully aware of what to expect, nobody sugar coated it and knowing this made the decision so much harder but the reality of it has made me feel so frustrated and sad at times. Just a couple of days ago I sobbed at my 20th visit to the loo as I was so sore and nothing seemed to be helping. Today things have improved and although there are still sudden rushes to loo and near misses do happen I can see light at the end of a possible 12 month tunnel. I know that in 6 month / 12 months time I will look back on this and wonder what all the fuss was about!

Not a day goes by when I am not grateful for the outcome I got from fighting cancer. I believe that I am truly a lucky person to be here today.I remember ladies that have not made it and no matter how hard I might be finding it at the moment I constantly remember how fortunate I am to be here and to be going through this.

Over the last year and a half I have made some fantastic friends, friends that will be with me for a life time as my husband always says 'We are lucky in our bad luck'.

I am looking to 31st January and the 12 month anniversary since my pelvic exenteration and the removal of the cancer. As each month goes by I sigh a little sigh that another month edges me towards that 5 years of being cancer free.

The champagne is chilling in the fridge and even if it causes an increased number of visits to the loo I will be partaking in a glass or two to celebrate life, my life and the wonderful things that brings with it! A wonderful husband, great family, fantastic friends old and new and a charity whose awareness and work I will always promote and which will be a part of my life now and always: Jo's Cervical Cancer Trust and for the inspirational, caring and supportive ladies and staff that I have met on there.

Life interrupted

2011-10-26T20:18:51Z

Well it has been a while since I have put a blog post on here mainly due to the interruption that was cervical cancer becoming less of an interruption and allowing my life to start to return back to normal (ish).

People always say that a cancer diagnosis changed them and after my first set of treatment I did not understand it. I never felt anything other than relieved that the treatment was over, exhausted and convinced that the cancer had gone. We all know how that turned out!

After the pelvic clearance I found a new way of looking at life, it was not gratitude although that was part of it along with relief but the need to do something more. It's hard when you are just an ordinary person, I'm no Lance Armstrong and although I have some great friends and family I don't have a massive circle to call on so fund raising would not be of much use really. I looked round and saw people just getting on with giving back with ease. Luckily for me the other charity that helped me through me journey offering me friendship, support and was my lifeline was Jo's Cervical Cancer Trust and they had just advertised for voluntary support leaders. The application was strict but I applied and got accepted onto the training at the end of this month. I enjoy helping to support others and missed having face to face contact when I was first diagnosed so if I could help to provide this for someone else then this would help fulfil my 'giving back'.

I was also asked by my specialist nurse to provide my patient experience at a study day recently. I accepted the 30 minute slot without much thought and then as it got nearer the panic set in!! After a few sleepless nights the presentation was delivered. What an experience to share such personal details and your story with others, it was very powerful for those at the study day and gave me the opportunity to revisit the journey. Some of it was quite painful and other parts I remembered fondly but as an exercise I found it very therapeutic and would highly recommend it.

Through this reflection exercise I have reconfirmed just how lucky I have been with my care and treatment since my referral to the hospital (Cancer hospital in Manchester). It inspired me to visit some of those people who made a difference and thank them (again in most cases) . Although they were 'just doing their job' they made a massive difference to my care and recovery and when you hear the stories from others about the way they have been treated I know that I had and still continue to experience first class treatment. I believe very much in treating others how you hope to be treated yourself and during my journey I have been lucky to have encountered others with a similar outlook.

I will be returning in December to the ward I spent 6 weeks in over Jan - March this year to have my ileostomy reversed. I am petrified not knowing how severe the side effects will be how this will alter and impact my quality of life which currently is excellent with two stoma's thank you very much! Am I making the right decision to have this done? I don't know but what I do know is that I will be treated well whilst I am having it done and if the worst case scenario is that I have to go back to an ileostomy bag then my urostomy will not feel lonely and in my opinion that is not a worst case.

For those of you that are just at the beginning of your journey, try not to despair, take each day as it comes and break your journey into small manageable ones, it helped me to cope with receiving so much information and achieving little goals on the way spurred me on.

Mostly I don't think about cancer any more, I am getting on with my adapted life now but there are still times when it is all I can think about and I spend my time hoping that it will never come back. Will there ever be a day when that does not happen at all? I don't know but my next milestone is 31/01/12 which will be 12 months since my operation and hopefully 12 months all clear. To me when I hit that 5 years all clear I will sigh a huge sigh of relief and in the meantime I will just try to get on with my life giving back in my own way.

12 months on......

2011-06-16T12:54:15Z

It is 6 months since I last put anything on my blog and that was just after sinding out that I would have to have a pelvic exenteration. I had already had 6 weeks of radiotherapy and 6 cycles of chemo but as the cancer had not gone something drastic had to be done.

Well I am pleased to say that after nearly 7 weeks in total in hospital including being rushed back twice I am now at the other side of it all!! It was confirmed that the surgery provided clear margins and this week I went back to work for the first time since I was diagnosed on 14th June 2010.

For anyone out there who might stumble across this and is having surgery for a pelvic exenteration I want to say it is not easy obviously but it is not nearly as bad as you think it is going to be. I live my life more or less the same as before but I have to plan in advance and be organised much more than I was.

I have been left a very different person than the one that first came on here 12 months ago but I am living and for that I will be forever grateful.

I have been very fortunate and lucky to have had some wonderful family and friends supporting me and to them I cannot thank you enough.

2 more sleeps!!

2010-12-23T12:34:56Z

The last 6 months have been a whirlwind and in a way I am still in June so when I wake up to presents on Saturday morning it will be quite a shock!!

I am really looking forward to Christmas and spending some quality time with family and friends.

I never thought I would be one of those people who would have to deal with cancer in my life as it was never going to happen to me. But it arrived and although it is not easy with fantastic support from husband, who is just the best, my parents and my friends I have got through each day.

I was hoping that I would depart from this journey at the beginning of December when I had my 3 month review but that was not to be and now I am looking to the end of Jan to have this hateful thing cut out and removed from my life once and for all. That day cannot come quickly enough!!

So its been a bad few months in terms of health but in terms of support and friendship I have been very, very lucky not just with 'real' friends but 'virtual' friends both on here and Jo's Trust and I would like to thank anyone who has replied to one of my blogs, responded in the forum or sent me a friend request and a private message. This site is God send, or rather, the people that frequent it are special individuals who even in their darkest and difficult times can reach out and offer comfort - Thank you for that.

Merry Christmas and a happy and healthy New Year to everyone, I look forward to speaking to you all again next year when I hope we can all share in some good news.

Trials and Tribulations

2010-12-22T17:37:41Z

Had my EUA on Monday and spoke to the consultant before we left. Good news is that it looks like although there is still residual cancer in the cervix it is confined to there only and can be removed. On removal I will loose some of my bowel and will have to have a temporary stoma but they are hoping to reverse this some months down the line when the swelling and radiotherapy damage has gone down.

They think that they can save my bladder and although I will be in hospital for 3 weeks and it will be a big operation my consultant is confident of a cure!!! Great news I am so grateful I cannot begin to tell you. He did say that this is the only thing that they can do now as I would not be able to have any further treatment having exhausted my allowance of chemo and radiotherapy in July and August. I am elated that he says they are still looking to cure but I am also apprehensive and cannot shift the small cloud that is hovering and reminding me that if this doesn't work then ........... I only ever seem to come on here and blog when I am feeling low and not the most positive and yet I am naturally a positive person. You probably do not believe this but it is true!!

I find it hard that your diagnosis and treatment plan can change quickly and you have no control, you just have to go on this scary ride into the unknown. I have gone from one Oncologist to 3 consultants in a month and I think that a temporary stoma is good news something 7 months ago I never would have considered ever thinking was good news.

I know that based on this new set of information I am lucky and regardless of the trials and tribulations that you have to go through to get there a cure is a cure and I say bring it on!!!

Merry Christmas to everyone who reads this and please cross everything for me at the end of January.

Which dog can jump higher than a Christmas tree?

2010-12-15T14:05:18Z

Answer: All of them. Trees can't jump!

Playing the waiting game trying not to think about my pre op and consultation tomorrow and a dogs trust calendar dropped through the door. It made me smile so I thought I would share with you.

Not sure if I will get the CT results tomorrow and to be honest I am not sure what I am expecting because when I did not get the all clear I was that disappointed and shocked I failed to ask any questions ...... stupid I know!

I am now armed with my trusty list of questions and a well versed husband so roll on tomorrow and lets get it over and done with.

To anyone also waiting for results or going to appointments - good luck and take care

Liquorice & Blackcurrant or Lemon?

2010-12-13T06:08:55Z

CT scan today and I am pondering should I stick with my usual choice of liquorice and blackcurrant drink or be daring and try the lemon?

Does anyone have an opinion on this?