Confused?

Good morning Steve and Lorraine 

Today I find the weather much cooler, it had rained, well poured it down here over night, such a relief for the wildlife, I’m sure all the flora and fauna  have felt the benefit of it, anyway I just thought I would share my happy activity with you, today I’m putting on my makeup, some nice colourful clothes and my wellies and taking the dogs to the country park to meet my walking friends so we can all splash around in the puddles, we will all have fun and a jolly good laugh, we will be covered in mud but who cares when we can have so much fun.

I hope you are both doing something to have fun, but whatever you do have a smile and make a good memory. I hope your appointment for Christie’s comes soon.

hugs to both

Donna

good morning Steve and Lorraine 

how are you both doing today? 

Hugs

Donna

Marning Donna 

Tired a little this morning & trying to catch up on a bit of housework. lol Lorraine is eating better although not as she used too but small steps? Hope yure doing well?  We.ve the rain but i think better than that oven we had last week, can't stand too much Sun.

Stll awaiting app. for Christies & Immunology but the did say it may take a couple of weeks. As each day passes I am getting more used to what is happening, after all I cannot change things even though I would want to.

Well must carry on & plan soething for tonights tea. lol 

Have a great day & make sure you wellies don't leak. lol

All the best

Steve & Lorraine.

Since my last post things have moved on & not for the better? After our initial meetings with (we assumed were Oncologists) we saw a senior oncologist at Christies M/C. 2 days ago.

Until this meeting we had convinced ourselves that my wife would be eligible for the Immunolgy pill having discussed her condition with a variety of Macmillan nurses etc.

We were told that she is not eligible as her cancer does not have the markers required? So the only option is Chemo the one thing my wife has reservations against.

Further the "Approx"  6-12mths. time span for her given we have been told is NOT Approx.? more a realistic timescale. This by the senior oncologist?

Totally shattered by this news & still struggling to accept what we have been told.

First time my wife "filled up" when this was said.

So she starts this Chemo in approx. 2 weeks. We have been told that she may "taste" mettalic in her mouth, but also, that the Chemo could cause a Heart Attack or Stroke?

I am glad that the oncologist has been frank with us & gave us the prognosis as it is , but obviously NOT what we expected!

I am at a loss as to why we were given "hope" by the one's we saw previously in that "all people are different, & some go past the approx. you have been given for as long as 2, 3 even 4 years, it all depends on the person"?

I feel let down by this for giving us False hope when we needed to know the exact position as possible.

Have you heard of the new trial ! The Nero  trial ? You may qualify for this, I have read that this is promising.  Also why does your wife not have the correct markers ? I would question this and maybe get a second opinion.  A lot of people survive years after a prognosis, I have friends that have lived on by years.  My husband has just had 6 rounds of chemo and has done amazing ! The cancer has shrunk so much we are watched by and waiting now. And he was t so poorly as they gave him the anti sickness pill that lasts 72 hours Be positive 

Hello Another day

Thanks for your reply. Apparently the DNA of a cancer cell differs as with human DNA. Immunotherapy works by seeking out a Protein associated with the Cancer. Some cancers have a lot of this Protein , some not so much, & some not at all. My Wife's falls into the none at all class. so it would be a waste of time with the Immunology pill as it would have nothing to go for..

Until you mentioned it I'd never heard of the Nero Trial but having looked online it seems it is specific to cancers caused by Asbestos?

We were told that the usual 6-12monts guesstimate  was down to the individual as some survive way past this, others not so. Indeed we were told this by a Consultant initially which boosted our confidence that she may have longer than the time allotted?

However, upon speaking to the Oncologist this was soon shattered which put both of us in shock---again!

My wife was also told she is not a candidate for trials as her body would not live up to the rigors of such? Apparently Trials are offered to patients who are relatively "fit" as the vaccines used are increased/althered etc. & it being an intense proceedure with daily commute which my wife's body would not be able to sustain.

So Chemo is the only option open for her.

As a footnote it was explained that some people are not even offered Chemo because of one thing or another it would be ineffective? so how they must feel to have nothing offered them -----I don't think I could cope with?

Good morning Steve and Lorraine 

I am just reading your update and I’m so sorry to read things are not what you had hoped for. I see Lorraine is going with the chemotherapy treatment and I hope this goes well for her. I had 4 cycles of chemotherapy, I didn’t know what to expect from it, when I went for my 3 month CT scan it showed there had been improvement and I really wish the same for Lorraine, I’m sending her a big hug not much help I know but my thoughts are with you both at this difficult time. I think you are both brave dealing head on with the prognosis. 

if you need a smile and a bit of a distraction, I measured my hair growth on  Monday and I’m now at 4 mm.

I know it’s easy to say but please don’t give up hope. Cancer is so unpredictable and chemotherapy could provide the kick up the backside her cancer needs. I wish I had some words for both of you that could help but I’m no expert, I’m just someone who understands what your feeling right now

take care both of you and if either of you want a chat please message me

hugs for now

Donna

Morning Donna,

Thanks for your much welcomed reply. The 2 chemo's they are to use are Gemcitabine & Carboplatin although at present I have'nt looked them up, but was assured there would be no hair loss? However, the Oncologist did warn that they could cause Heart Attack or Stroke? Lorraine is wary as she had a Heart Attack just before she was initially diagnosed with Cancer over 2 years ago.

What threw us also was the fact we were told conflicting stories over the 6-12 months? The last Consultant we saw (whom we thought was an Oncologist) & who now is a Consultant / Chest told us the time frame was "approx" as some go on for 2,3,4 years depending on the person?

However, the actual Oncologist last Wed. stated it is not approx. & 12 mths. would be the Max.?

I can appreciate sometimes things are said which may not be too accurate but with dealing with a persons life, would have thought advice/prognosis would be spot on? Still we are all human.

We were astounded at the number of people attending the Christie though. It got to the point where patients were having to stand as all seats had been taken? All ages too. from the very old to babies? really brought it home to us just how prevalent this Cancer disease is.

Good news over your hair length. ---long may it continue!. And hope the "dog walking" is still going strong? lol A bit of fresh air you are Donna great attitude in such dire circumstances. Good for you.

Carry on smiling & inspiring people with your experiences. Certainly cheered me up at times. God Bless. xx

Hi Steve

So pleased to hear Lorraine won’t loose her hair with the chemotherapy treatment, although some people have experienced hair thinning when on this combination of chemotherapy. If this should happen to her tell her not to worry there’s loads of stuff she can do to help with growth and strengthening. 
I completely understand the concerns you and Lorraine have around the heart attack and stroke, my advice for what it’s worth is the best available chemotherapy treatment will have been offered to treat Lorraine’s cancer, all possible side affects will have been taken into account, so give the chemotherapy a chance, if after the first cycle Lorraine decides it not for her she can say she doesn’t want to carry on with chemotherapy. Whatever the decision just keep putting one foot in front of the other and make happy memories. 
do you have a maggies centre in your area usually they are attached to the hospital, I would suggest if you have access to this resource you and Lorraine go along and have a chat with them. 

When I was diagnosed I, like you was surprised at the number of people and age span of others diagnosed with cancer, my treatment unit is full to bursting. I look around and think omg are all these people here because they have cancer, the numbers are such a shock.

I continue to get out with my dogs they bring much pleasure and help me keep fit. For the most part I continue to be positive, but I do have down days, but I can’t allow the down days to dominate my life and turn to depression, so I hope I don’t annoy you to much when I try and bring a little positivity to a situation. I do know we are all in a very serious place but I refuse to let cancer be me, I was Donna before my diagnosis and I am still Donna now, if I ever get on your nerves just tell me and I’ll shut up otherwise I will try and bring a little sunshine to both of you when it’s needed.

Have a great day

Donna

First time I;ve heard of maggie's centres? Apparently the neaest to us are manchester (Christies) & Oldham (the Royal Oldham Hospital.} Will have a look in more depth later Thanks.

Annoy me too much? Not at all, the opposite in fact, as i said earlier ypu lift the mood so please carry on. lol

I would inagine all with Cancer have their down days just like we have, part of the effect I assume. Still anything that distracts your mind has to be good.

After being on lockdown for the full 2 years my wife has become a "recluse" in that she only goes for appointments & this diagnosis has yet again put her back. Shame because I want to take her all over, as i imagine the best she's going to be is now? As you know the Chemo leaves you open to Infection & thats the last thing i would subject her to, she has enough to contend with.

Really glad to see that you are still maintaing the Donna before. Wonderful for you. --- keep it going!

Am awaiting a visit from a G/Son who lives in Sutton Colefield & the 3 that live in Macclesfield hopefull before Lorraine starts the Chemo.which is on the 19th. Fingers crossed they make it.lol

Once again keep the "funnies" coming if you can, they brighten the time. 

Catch you later

xx