Hi Lyn,

She has polymorphous ademocarcinoma. It started when she decided to get her hearing tested. They found her ear drum was not quite right. Sent her to GP, who referred her to hospital. Think initially they did an endoscopy which they did find a lump but weren't concerned - didn't even give her the results! She went back 6 months later where they did the endoscopy again and found it had grown, then she got told they thought it was cancer. Was sent off for lots of scans which confirmed it. Think they did a biopsy too. They attempted to remove it through the roof of her mouth, in August but when she went back for a check up and they did another biopsy, they found it was still there. They then referred her to a London hospital as they had more specialist drs. They have said that they will have to go in through her face. They said because the cancer is very slow growing, there wasn't too much need to rush it through. Initially she was going to have it done in June, after her holiday but they have now bought it forward as its pressing on the artery.

cx

Christine, this has made me chuckle while reading. Sam, we are your wing men, so you have us to back you up xx

Thank you Caroline, for the information about your friend, you are very kind.  I have been reading the posts between you and your pals and you are all so poitiive and fun people, making the best of things, I wish that I could be the same, just want to get to Monday to see the consultant.  My appointment is not until 4.30 so I suppose that it will be too late to have any tests done that day, it is the fear of the unknown  that is making me a nervous wreck.  So happy that you are on the road to recovery and getting on with life.  I went to Iceland last year isn't it a lovely place to visit, but so expensive!

Lyn xxx

Hi Lyn,

Completely agree that it is the fear of the unknown. I think what made it all a bit easier for me is that I have been around cancer now for a number of years. I volunteered for 5 years, in our local hospice, where I worked on the inpatient unit. I absolutely loved it - if I could make someone's day a bit brighter it felt so lovely. I now work in Palliative care so am around seriously ill people a lot of the time. I think having a good support around you and having a bit of knowledge helped me to remain positive. I've seen people who are at the other end of cancer so I know I've been lucky and determined to stay that way!! I could say don't worry, but that's pointless - we all worry!! But do try and stay positive. Positivity is a huge thing for me. If I can focus on the positives, the negatives are easier to tackle. And I know that worrying is something quite pointless - it won't change the situation and just brings you down. Try to keep busy and look for the bright things every day xx

Hi Caroline, what a wonderful, worthwhile job you have.  I work two days a week for an animal charity as a shop manager, and raising money for our rehoming centre gives me so much pleasure.  Positivity, sadly, is something that I lack regarding health.  I know that I suffer from Health Anxiety.  THe doctor that I saw on Tuesday has given me a contact  number for  'Steps2Wellbeing' which is part of NHS Dorset Healthcare University.  I think that they can help with  things that are making people feel bad with life problems.  Anyway I am going to call them later on, it can do no harm.  Hope that you are having a nice day, it is grey and raining here in Dorset!  xx

Good to hear you have some support!! Raining here in Hampshire too!!

Hi C&C
Thanks for your supportive & amusing notes. All good here, after last weeks news have regained my composure so am not quite so p155ed off.  I am however going to be complaining to my hospital about the missed opportunity to do the frozen section that would have given me weeks of my life back in the hope that someone in the future doesn't have to go through an unnecessary procedure like I do.

Caroline - you're spot on, the sentinel nodes were cancerous so have to have ANC.  More chemo will not help (think its gone as far as it can) however the hormone treatment will so that's fine.  Cheers for info re oil & cream, have started moisturising scar but it still feels decidedly yuck from my partially numb chest's point of view.  Still very positive here so fear not.

Christine - thanks for very comprehensive note, despite your technical challenges (the amount of stuff I've lost in cyber space!).Am off to dentist 20th, am positive will not need any extractions but always (ish) do as am told.  I'll not be having a drain again for ANC as produced so little fluid for round 1 and surgeon is thinking of stopping using them all together (I do get the impression I may be her guinea pig!).  The teaching to ignore pain part sounds very clever...hope I get some of that, if only I could ignore all the pains in my life eh?  And putting on deodorant already feels weird in the partially numb armpit so look forward to an extra helping of that.

I am quite worried by the potential violence within your remaining boob, am seeing it up for GBH at some time in the future!  

Glad the weather has turned today but rest assured my bright red poncho does a marvellous job of keeping me dry and also making me look like a right eejit....all at the same time!

I haven't noticed any side effects in the 3 days I've been taking Letrazole now but maybe its still early days?

My mood has been helped by having a lovely long weekend with pals from oop north and Ireland who have been most entertaining.  The pal from up north came down not only to see me but also to escape trench foot, she's from Snaith in the middle of the floods and left hubby at the ready with bricks just in case. Luckily my irish pal is more than used to inordinately large amounts of rain on a daily basis and lives in waterproofs!

Also went for a drive today, all including car & fellow road users survived so am happy we can do that again.

So tomorrow am having fully body CT scan to check no more naughty cancer elsewhere and the mammogram to try & locate missing marker clip thing ( I certainly haven't found it in the interim hiding anywhere in the house...).
Its my Mother's birthday Weds so she's coming up from the New Forest to see me and receive her lovely gifts (she may be disappointed!!) but more importantly see me of course!

My seroma is rapidly looking like I have a side boob under my arm, an interesting look.  
I've another northern pal down next week and have a big Saturday night out planned in that big London so am having lots of fun pre op no. 2.

Lyn (@christmas2018) - good luck with your treatment & keep the money rolling in for the animals.

Sam X

Hi all!

I'm hoping a week without any news from you, Sam, is due to you having too much fun to log in.  Caroline, it's good to see you are getting on with things, now. 

I have a little bit to report. I went for my knee X-ray on Monday and my appointment with the lymphoedema nurse on Thursday. I was told the doctor would get the results from The X-ray in ten working days and to contact the surgery if two weeks went by without hearing. It was quite surprising, therefore, to receive a phone call from the surgery on Thursday, saying the results had come in and the doctor wanted to talk to  me about them and would telephone me Friday afternoon! Hmm!

At the lymphodoema clinic on Thursday my measurements of the fluid in my non boob were good. The numbers were coming down a little but the nurse was a bit concerned by the discolouration of the skin so she asked me to contact my BCN.  She is referring me for laser treatment to the lymphoedema in the scar in a few weeks.

I did phone the BCN and she saw me yesterday. She isn't at all concerned about the discolouration, but is referring me for a scan and drainage under ultrasound guidance, again, in a few weeks.

After the hospital I did a bit of shopping then went to my daughter's to report on my hospital visit.  While I was there my GP rang about my knee.  The good news is I was not imagining my pain. The bad news is the knee is shot!  She said the cartilage is worn away, especially on the inside, where the worst pain has been, as the bone is rubbing against bone!  I asked what was next, and she said the dreaded words, "You will need a knee replacement!" Agh!!!!!  But then she tempered that with the word eventually.  I suggested we leave it as long as possible before going down that route as it is feeling a lot better than it was at Christmas and she agreed. Yay!!!
Then she said she wants me to talk to her again after Easter as it will only become essential when injections don't work and pain killers don't help.  Hopefully it will be ok for a lot longer than that.

I'm  beginning to understand my poor old mum, whose birthday it would have been today, when she used to say "It's no fun growing old" I used to blithely tell her to consider the alternative and be glad she was alive to grow old. Sorry Mum! 
 

Apart from all that I am going great. I thanked my doctor, yesterday for talking me into taking the Letrozole as my side effects have been negligible and I am feeling really well. She was delighted to hear that, as she only usually hears the problems not the results of her work.

Have a wonderful time in London, Sam, and Caroline keep up the girly weekends.

Lyn, I hope you can learn to relax your anxiety. We optimists still get illnesses but don't have the added problems of worrying about it so don't feel as bad.

Christine xxx

Thank you Christine, anxiety high, waiting now for results of nose biopsy.  I am happy for you that your knee op is not imminent.  Touch wood, I have no troubles in that department, but several of my friends do and I know how terribly painful it can be.  Two are due for their operations in the next  coming months.  I hope that the Coronavirus does not cancel their procedures because they are all psyched up now to go ahead.  Our poor NHS.  Hope that you are having a nice evening. x

!yn