Scan results

Oh Sheena! What can I say? Words don’t feel adequate to the task. I know you weren’t optimistic so  guess at least there were no horrible surprises but there is a difference between suspecting all is not well and hearing if from the horse’s mouth. I am so very sorry. 

I think your decision not to have any more treatment is entirely rational. I think your attitude about choosing quality and not wanting to know how long is admirable. What does your family feel about your decision? I truly hope they understand and are ready to come alongside you in whatever comes next. 

Tomorrow is going to feel like a different world to you when you wake up. I guess there will be some jobs to do such as setting up an appointment with your GP. (Your care will now be overseen by your GP rather than the hospital and if I were you, I’d be down the GP surgery to make sure I get any referrals I need, for example to community nurses and occupational therapist.) How about starting as you mean to go on with a celebratory breakfast? 

Lots of love and the gentlest of hugs 

xxx

Dear Sheena, I was so very sorry to hear about your results. I think when waiting for results, we all think the worst while hoping for the best. I know you have felt awful for the last while and therefore your decision is understandable, going for quality! I assume, although this was ultimately your decision, you would have had a very difficult discussion with your husband and son. As @Daloni has said, I hope you wakened this morning feeling a weight had been lifted from your shoulders. I would also advise phoning your GP ASAP so you have backup, when you need it which I hope and pray will be a very long time off yet.

In the meantime, enjoy each and every day and make lovely memories!

Dear ,

So sorry to hear of your scan. I had the choice of aggressive Chemo when I was first diagnosed, I opted out for several years because tumors were not too big, and i wanted to be happy.  then in 2018 had a round of BR (bendamustine/rituxan) and it almost killed me I lost 18 lbs in a few weeks, could not get out of bed and felt awful. After that I decided to go low and try to enjoy quality of life as you have. Again, I am so sorry for your scan and truly understand your decision. 

Enjoy each day. and savor each minute. Do things that make you happy.  I wish you many, many, many joyful days .

Hugs,

Millie

Thank you Daloni.

I had prepared my husband and my son for the bad news.  They said I had been right about how my treatment was going up until now and didn’t think I would be wrong in my results this time.  They have been outstanding through all of this.  They have given me tremendous support and encouragement.  I couldn’t be more proud of my son.  All the little kind caring things he does, lots of hugs and help around the house.  For a lad of 19 he is marvellous.

They are behind me in my decision, as are my friends who have all supported me and surrounded me with love.

I am being put in touch with a MacMillan nurse and that is good advice from you about getting in touch with my GP, I will get that organised.

I did my admin some time ago but I want to go over it all again with my husband.  I will be handing power of attorney over to my nephew for my mum as he is the other named person.  Poor thing she has dementia and is 89.  I’m not going to tell her my news.  She knows something is wrong with me but she mostly forgets what it is and asks “what is wrong with you anyway?”  which is hard to take, for her and me so I just avoid any mention of my illness and pretend I am fine.

I want to stay in the community as it really helps me.  I might not say a lot but I listen and I like to hear how everyone is doing and what they are up to.

I wish you the very best for this treatment you are on Daloni and wishing it improves the quality of your life for some time.

Love Sheena x

Hello Annette

Thank you.

I have been making memories since my diagnosis.  I feel very lucky to have moved to my dream home, spent Christmas in it and now summer.  Celebrated my son’s 18th birthday, and his 19th, and my 20th wedding anniversary. Been on a wonderful cruise and another holiday.  Not to mention the numerous gatherings I’ve had with friends and family.

I have been shielding but I have decided I want to see people now so I am looking forward to visitors to my garden, trying to stick to the rules and stay safe.  I think I am also going to go out for walks with my husband.

you are right about feeling a weight has been lifted. That’s exactly how I feel.

All the best to you and your family.

Love Sheena x

Thank you Millie

Hugs gratefully received.

If things were different right now I would be dressing up and heading to Glasgow or Ayrshire to have lunch or dinner with friends regularly as that is my favourite thing to do. As it’s not possible during the pandemic I will just have to order in some lovely food and wine.  Not sure about the dressing up though haha.  Think I will just be comfortable and leave the wig off :)

Wishing you many joyful days too.

Love Sheena x

Hi Sheena

I'm so sorry to hear of your poor scan results, what devastating news for you, your husband and son. I have "liked" your post but my goodness it is so far from the truth, I hope you understand that. 

I wholeheartedly agree with your decision to enjoy what life you have left, it's exactly what I would do given the same choice. Now is the time to cast the shackles off and make lots of good memories for your husband and son although I'm sure they have many already as you come across as a wonderful wife and mother. 

In my case I have thrown myself into making the beginnings of a productive vegetable plot which I may or may not enjoy for years to come. It's something that I have done for the last 40 years but isn't it ironic that now it's the best and most organised it has ever been but a lot of that has to do with having to shield, the good weather and having to stay put.

It's time for you to let your hair down (sorry if that's the wrong choice of words) and enjoy life as much as is possible to do. Hopefully there will be more and more chance to do that if we move away from these necessary conditions to rid us from the Covid19 virus, 

Take care Sheena and stay safe.

Tvman xx

Hi Sheena

I thought about how I wanted to respond to you as your post really resonated with me. Having incurable cancer is almost as bad as it gets but I can also understand that your decision is a bit of a relief in some ways. I am also glad that you are so happy with your decision. At some point quality of life trumps quantity and you have the summer to look forward to, you have the support of your family and no more awful chemo for you to endure while they watch you suffer. 

My rectal cancer with lung mets are also unlikely to respond well to chemo, I suspect that I am about a year behind you and I hope that I can make the right decision when the time comes, as clearly you have. Have a wonderful rest of your life, we all know what is important, love, family and laughter. 

Enjoy

Thank you Tvman

I am looking forward to my lovely friend visiting today.  My first visitor since lockdown. It’s time for the strict shielding to go out the window in my case, although I do intend to do things as safely as possible.

I have been enjoying the flowers and plant chat and all the lovely pictures. I have a garden but it is pretty much maintenance free.  I do like flowers though, I think because my dad was such a keen gardener and always tried to get me interested.  

I hope the weather is good for you today in lovely NI. My gran came from Whitehouse. 

Hi Nicky

I think I remember you from the bowel cancer group. 

I spoke to a lady at a hospital visit who was in a similar position to both of us at that point; rectal cancer with lung mets and like me liver mets.  She was going back on the chemo as things were growing again but she’d enjoyed a year treatment free as she had responded well to the chemo.  The same regimes you mentioned.  It didn’t work for me because my cancer is too aggressive.  But please take hope that it really can work for many people, I saw living proof of it and I hope it does for you too.

Best wishes

Sheena xx