Hi George,

I am so sorry that you had to call the doctor in for your mom on Saturday, although it doesn't sound as if he did much for her.

You will know more about your mom's cancer when she finally gets her diagnosis, but it sounds as if it is fairly well advanced. As I said in one of my previous posts, it is your mum's life and, it is up to her to decide what she wants to do in the way of treatment.

There is nothing worse for cancer patients than finding that their family cannot accept their decision not to go ahead with chemo. This is where it is important that you and your family can be strong for her and support her in her decision.

In many cases we are told that chemo cannot get rid of the cancer, but might reduce the size of the lesion and give the patient a little longer. The question here is, at what cost? I myself have refused chemo and radiotherapy and instead had extensive surgery and Letrozole for 6 years.

Have you heard any more about further tests or are you still being left in limbo? Next time you are at the hospital, it might be worth asking if they can give your mom some tablets to cope with the pain, as they can prescribe stronger drugs than her GP, and these should address the pain.

My Dermatology appointment this morning didn’t have the outcome I‘d hoped for. It is a cancerous melanoma, called Lentigo Maligna Melanoma. The Dermatologist said that there is a slight chance that it might be pre-cancerous, but they won't know until they operate.

She offered to do a biopsy this morning, but advised against it, as she said that this would cause additional scarring. She has referred me to the plastic surgery consultants, as it is so close to my eye that we could run into problems. She advised me that it would be best to remove it first and wait for the pathology results to see if it is sinister or not. However, she said that she is pretty certain that it is cancer, caused by the sun. She said that I am likely to need a skin graft after it is all over and I shall have a lovely black eye for a while. She thinks that I should be seen in 1-2 weeks. Here's hoping that it is fairly well contained.

Kind regards,

Jolamine xx

Hello Jolamine,

   I'm so so sorry for your news. How much more must you be put through? I was really hoping for some good news for you. Have you been able to talk to your family about this? I hope you have some support. I also hope if it is anything sinister that things have been caught early on and can treat it effectively. 

Mom had an ultrasound this morning and has been told to ring the respiratory team in a few days to find out the next step. She is pale and exhausted. It seems this thing inside her is sucking her energy and is literally sucking the life out of her. Frankly, I now wouldn't blame her if she did refuse treatment, I don't think she could physically take it. 

 Do you have good hospitals where you live? We live very close to a 'top' hospital which I also work at so I guess I have confidence that they are providing g the best care mom could get anywhere and I don't blame any of the GPs who saw mom in the run up to her diagnosis as her symptoms were so random and nondescript that it was impossible to think anything g more sinister was behind them. I hope you have the best team taking care of you and that you have the strength and support to tackle whatever happens in the next few weeks and months.

thank you for your support and sorry for my ramblings, having a frustrated day today! Take care and best wishes X

Hi George,

It must be helpful working in the same hospital as your mom attends and, it must also be reassuring that she is in one of the best hospitals. Sadly, my first hospital was just a local general hospital, but I left there after my lumpectomy, but before my double mastectomy, because I was unhappy with the care that I was getting.

My surgeon at the new hospital was excellent, but he retired 2 years ago and is only doing private work now. I was then assigned to an excellent lady consultant, but then got side-lined to a GP who works a couple of days a week in cancer care. I wasn't impressed with her routine annual checks either. It has taken me 2 years to get back on to the first lady, who I saw only recently and, what a difference in her treatment of me!

I have stopped breathing under anaesthetic before, so any surgery has to be done in one of the major hospitals, which is fortunate in a way. You really do need to have faith in your care team, don't you?

I am delighted to hear that your mom had an ultrasound today and, hope that it is good news in a few days time. It is a sad fact that as people become less physically fit because of cancer, it gets harder and harder to have treatment. Your mom may be the wise one, if she declines any treatment. A lot will depend upon her eventual diagnosis and what her complications are.

Kind regards,

Jolamine

Hello Jolamine,

thank you for your reply. I'm very glad you have a good consultant and are confident and happy with your treatment. I really do think it's important to have a good relationship with the medical team looking after you, I also like to have things explained and then I can go home and Google them! Have you heard any more from your team about your skin lesion? I really do feel for you with everything you've been through and are still going through. I work on a plastic surgery ward at the hospital and they are a very good team and can do some wonderful treatment. (I'm facilities not nursing staff but I have direct contact with patients and meet some lovely people). Do your family know whats going on with  your health at the moment? Life is so unfair, you've already gone through so much already.

mom phoned her respiratory team today and they have the scan results but the consultant hasn't looked at it yet. They are considering giving her another EBUS exam now she's been on beta blockers a week. They will be in touch as soon as they know the next step. She was in pain today. This is horrible.

please take care of yourself,

best wishes X

Hello Jolamine,

  I can’t believe they managed to sort your surgery out so quickly for you! This is very good as it’s good to know things are on the move and reducing the waiting time might help to reduce the time to stress and worry about things. But also being so close doesn’t mean much time to prepare and it’s coinciding with the stress you’re already under after the sad loss of your father in law. You have so much going on, it’s such a tough time for you. I’m glad husband and daughter know, it’s difficult finding the right time to tell people. 

Mom said she’s not too worried if they tried the EBUS again, now she’s knows what to expect. I think she will be asking about stronger pain relief now. I read some books about life expectancies with lung cancer and stages and I wish I hadn’t. As far as I can work out from where they’ve found lesions, mom is potentially at stage 4 already. It says something about 6 months without treatment. I like to know everything like yourself, and without anymore info I’m filling in the blanks myself. I wish they’d tell us more soon. Today it’s  been a month since mom went out on her own. I use code to think 70 was really old when i was younger but now I know it isn’t at all. 

 Thank you again for your support and I wish you all the best and send you good health, take care of yourself.

best wishes,

X