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Author Topic: Coping with complications and new diagnosis  (Read 2342 times)
alisonhelen
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« on: April 21, 2012, 06:45:02 PM »

As some of you may have noticed, I've had a week or so break from the forum and not been as generally active as before. Firstly I've been away this last week and deliberately didn't look at the forum while away!

The reason for this is that I've had to deal with complications and a few lots of bad news regarding my own situation.

Last November I discovered that I again have tumours growing in my lungs, what with huge mix ups between hospitals, overworked staff and bad communication I didn't start chemo when hoped and indeed will only start it again in May. In January as some of you may know, I caught the noro virus, which resulted with me passing out unconcious in my bathroom (twice), injuring my head and breaking most of my ribs on both sides. While in hospital I had to have a routine head scan because I'd been unconcious due to a head injury, it was then found that I had a mass in my brain, told to me in the corridor by an inexperienced junior doctor, you can imagine the impact this had on me. It was a few days and an MRI scan before I was told that  it was a benign tumour that has possibly been there years, but because of this I can no longer have Avastin as part of my treatment and because when my tumours were K-RASS tested they were found to be mutant, my options for treatment have been narrowed even more. Yes, I'm glad the tumour is benign, but it is still a blow. I then saw a specialist about my lung tumours who assured me that he could operate successfully and remove the offending b*gg**s. I was ecstatic, things were beginning to look hopeful, but then 4 days later I recieved a letter from him saying that on further discussion with his team, they had decided that surgery was not a feasible option and that surgery was cancelled. Yet another blow to my morale and more annoyance that as chemo had still not started the b*gg**s were still growing. Through all this and over the last 11 months I have had ongoing problems with my stoma, it blocks completely putting me in agony for hours and resigning me to bed for the day, meaning I have to cancel all appointments etc at very short notice as I have no advanced warning of it happening, I have even ended up in A&E twice and hospitalised once. Anyway 2 weeks ago my surgeon operated laprascopically to find the problem and has released the 'band' around my stoma (I think this is the opening in the stomach wall where the stoma passes through). Touch wood, there has been no problems since surgery and I am sure the op has been successful! The day before surgery however, I was asked by my surgeon to come into hospital as he needed to speak to me........ never the best news. He told me that the result of a PET scan I'd had for my lung tumours also now showed that the cancer had spread to my bones, in particular my hip and ribs were involved. No need to tell you how I felt, just completely gutted. A bone scan was ordered for the next Thursday and I also had a meeting booked with my oncologist for the day before. My meeting with my onco was for 1.30pm, I was finally seen, by a very harassed and tired oncologist who had worked without a break or lunch since 9am that morningat 6.30pm. Chemo was finalised, bone mets discussed and decided that it would start ASAP. Thursday and my bone scan dawned and received the news that my chemo would start on May 3rd, so I phoned my husband and told him to book the next week off work, I had decided that we had a window in which to take a break and that I definitely needed to get away from the phone, hospital and computer! So that night I booked us into a pub in Suffolk for B&B and 2 days later on the Saturday we were off! We loved Suffolk, moved on to the Cotswolds on Tuesday for 2 rainy days and finally down to sunny Bognor Regis for another couple of days. While in the Cotswolds, with the rain coming down in stair rods, my CNS nurse rang me with the news that the bone scan confirmed that there was NO spread to my bones, only damage and new growth showing up from the breaks to my ribs and the start of osteoperosis in my hip! Never have I been so glad to be told such news.

So hopefully you will now understand my 'quietness' on the forum over the last few weeks. I have bounced back again and hope to continue to imput into the forum. It just goes to show that these sophisticated machines and technology, do not always give accurate results. My emotions over the last few weeks have been on one hell of a roller coaster ride. I've had help with this from people here at BBC and friends and family at home, you all know who you are and I thank you from the bottom of my heart, I will not forget!

Thanks for reading and to everyone out there, don't ever give up, you will get there in the end!

Best wishes, Alison
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Come with me on a journey, no map, destination unknown and I'll travel your path with you. We'll hold each other up when the road gets steep, we'll laugh and cry along the way, because I feel your pain and you feel mine.
Feel free to read my blog:-'Why not me?' http://alisonhelen.blogspot.co.uk/
chools
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« Reply #1 on: April 21, 2012, 07:34:21 PM »

I think I too would be very quiet Alison if I was given your news, and had suffered all the problems you've been through There's always the sickening blow when your told that you have a serious illness, and with cancer it always seems to be much worse. No matter where you are in diagnosis/treatment cancer carries that small dark cloud that hovers above you, and you're never quite sure if it will keep its distance. And then there is the hope you are given with a surgery date only for it to be cancelled. I've had that happen to me, and for my notes to disappear into no man's land, this was in the early days when I was too polite to shout when I didn't hear anything for weeks! I hope you do get the treatment that you so obviously need soon.

There's nothing worse than realising that NHS staff are overworked, this dawned on me when an appointment for a colonoscopy was for 7:30 in the evening, and it transpired that staff in the unit has been working evenings and weekends for weeks to try and catch up with a backlog

I hope you continue your bounce back and all goes well for May

Kind regards

Chools
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Illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune, the cost of which should be shared by the community
alisonhelen
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« Reply #2 on: April 21, 2012, 07:57:58 PM »

Thanks Chools,

Have got my positivity back, which I admit suffered a severe blow for a time!

Alison
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Come with me on a journey, no map, destination unknown and I'll travel your path with you. We'll hold each other up when the road gets steep, we'll laugh and cry along the way, because I feel your pain and you feel mine.
Feel free to read my blog:-'Why not me?' http://alisonhelen.blogspot.co.uk/
Hazel
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« Reply #3 on: April 21, 2012, 09:23:12 PM »

Good to see you back Alison after such a rough time. Interesting that you were told.... you had a tumour in the brain.......it wasn't ...you can have an op......you can't {had that one myself} you have bone mets......you don't I wish the docs were able to hold fire until they have really looked at the situation, i am not in their shoes so i don't know what other disctractions and commitments mean that the patient gets lost in the mele.....but we do and dealing with a diagnosis of cancer is hard enough without a roller coaster ride added on like you have had.
You are still fighting though and you still have options, hopefully the Irinotecan will do a better job than Avastin would have done anyway!
Lots of virtual hugs.....can your ribs take it yet?
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KarenB
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« Reply #4 on: April 22, 2012, 09:46:51 AM »

Wow Alison what a roller coaster. I can only imagine what you have been going through. You've put some of my issues in perspective for me today. I wish you well and really hope that the chemo does what it needs to do to fight the little beggars. Good luck.
Karen
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suze
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« Reply #5 on: April 22, 2012, 02:30:50 PM »

Thanks for the up-date missis

 Kiss
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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
rose57
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« Reply #6 on: April 24, 2012, 07:00:37 PM »

omg Alison it sounds like to have been to hell and back and have  been put through a lot of unnecessary worry and stress.

To be told you have cancer in the brain and bones and then to be told you havent is, of course, good news, but to be given that wrong information in the first place is inexcusable and very cruel. 

Although the NHS can be fantastic, I certainly would not be alive today without it, I can never understand why medical staff have to be so over worked, cancer must surely be one of, if not the worse illness to go through and hard pressed staff and mistakes with diagnosis is un acceptable and avoidable, surley.

Anyway I hope you are feeling a bit better and that you will bounce back before too long, big hugs.

Rose x
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Figa
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« Reply #7 on: May 04, 2012, 05:01:23 PM »

For goodness sake! Sorry to hear about the last few months and weeks but great to see you back on the site. You have been a great source of information to me and give me hope for my husband. Thank you and I wish you the very best xx
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suzieQ
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« Reply #8 on: May 05, 2012, 09:12:26 AM »

So sorry you have had to deal with such a truckload of rubbish, Alison, but glad to hear you had a good holiday, you have certainly earned it. It is great to have you back, though. You have such a wonderful ability to listen carefully to others and find the right words to calm their fears and support them.

I hope that you manage to get through the chemo without too many side effects, and remember if you need a day in bed and not switch on the computer .... do it!
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