I have just been diagnosed with stage 4 secondary liver cancer. I felt I was in free fall whe I was told a few ago. I want to run but I can't.  We are a member of a club we do not want to be in and yet more that a third of people will get cancer. It's terrifying. I'm finding hard it to be the sick one too. I'm the fixer and doer in my family and I can't get used to not being that person any more. 

I wish you good luck with treatment. I also find Maggie's centre invaluable for counseling at the moment they have save me a few times ️

Hello 747, my heart goes out to you, I can feel the free fall you are feeling. Thank you for taking the time to write to me. I wish you the strength to bear this without such anguish and hope you find the support you need. x

Hi ladies,

Christine, interesting to hear about your call. That is what I kind of expected would happen. I might just ring them and say I'm happy to wait until October.  I do need to ask if they will be doing an ultra sound as my cancer didn't show up on a mammogram. 
Love hearing all your news and what you've been up to and feeling a little bit envious of the slow down of your life style. 
As to be expected life working in the hospital is busy busy but I'm enjoying the business and learning new roles.

will let you know when I've called the breast team and what they say.

Caroline xx

Hi Girls,

Just a quickie, I got a message last night, to log in to the hospital patient portal, which I did, to find a letter inviting me to a General Surgery appointment with the Breast Specialist Nurses team on Wed 8 July at 8.45 am. I wasn't told about this at my telephone consultation but this was, obviously what she meant when she said she would see my in three months.  

 Cxx

Christine
Wow, 3 whole minutes eh? If your BCN does the things that she should not altogether a waste of time I guess?
My letrozole side effects are all bone & muscle related and in reading about others haven't come across your symptoms, I do hope the BCN made a note of these things, I mean how busy can the BCNs be when most things are cancelled/shortened/delayed?
I think the "clap for Boris" instruction was STD related, fear not, no-ones stupid enough to congratulate him the same way as nurses etc.
Yeah I saw the article too, it was encouraging those with cv to keep their beasts inside, if I had it & did it to mine they would knock a hole in the door/wall/me....let's hope it doesn't come to that!
Don't get confused and mop the lawn, I'm still on no housework - more through choice as the days go by, when it gets really bad I may do something about it.  Did I mention that I have very low standards when it comes to cleanliness & chores.
Did a stretching class online yesterday, couldn't do some of the stuff re duff arm but feels a lot better today re reduced numbness & seroma, I've also started the magic stroking that you recommended so that will be helping it feel more like the other arm too.

Caroline
You should be even more envious of my life if its the slow-life you're after!  My only exertions are getting out of bed in the morning (thanks to Letrazole!) and exercising - this is how life should be....and I managed to get an on-line delivery slot for 19th so will do a big/heavy shop to supplement my one bag for life trips into town.

So today's thrilling instalment in this cv story is a barre class (ooo get me!), finishing my book and shopping for stuffed pepper ingredients...gosh, am tired at the thought!! Ha!

Have a good and chocolate filled (for normal people, not me) Easter weekend

Sam X
 

Happy Easter,

I don't think it will be choc laden for everyone, I've had my chocolate order noted as not available on my daughter's Ocado order.  She has just told me she's got a delivery slot for next Thursday but I had to get my shopping list to her in the next hour, so it's very much a guess as you go list. I need to be able to browse to know what I really want.  Fruit, fresh fruit and vegetables and milk are what I always need so they are on the list. Saves money, though, not being able to impulse buy that lovely cake or whatever else has been put there to tempt us.
 

Sam, I think I have given you the wrong impression of my housewifery. I am very happy to ignore house cleaning until the dog hairs on the floor threaten to clog up the vacuum cleaner, which is when I scrape them with rubber soles shoes and create long ropes of hair that can be picked up by hand! I'm a firm believer in doing the necessary stuff and ignoring the rest. I like clean, but dusty and untidy don't get to me that much. Having said that, yesterday I nearly did myself in with the Good Friday cleaning.  It was a ritual when I was a girl that Good Friday morning was when the house got scrubbed from top to bottom and you recovered in church in the afternoon! I don't go to church any more but the cleaning gets done. I recovered in the garden with a good book!

I'm a bit worried about your arm, Sam, I never had any problem with the stretching exercises, and was able to fully extend my arm even when I had the cording. I suppose it's still early days, though.

My silly knee has become painful again, but my new physio who examined me over video the other day has given me a new set of exercises, and I have an app on my phone that guides me through them and records my diligence. I get the chance to give feedback, and say if I had any pain, on the app. One of the new exercises gave me cramp which I reported and I'm not going to do that one again until I hear from her.

Well,  it's a gorgeous day. We have already been up the lane, the deer were clearly visible today, and some of the horses had been let out into the field.  Last year three of the mares had foals, but there were only two horses out today, one was lying down sunning herself and the other was looking very rounded in the belly so we might be having more babies this year.  I love that lane in the summer with all the animals. We get lots of baby deer, baby horses, usually lots of lambs, but they must be on another field, this year as I haven't seen any sheep at all. The bird life up there is fabulous, too. A little patch of heaven! Last year I wasn't feeling well enough to enjoy it as much, so I'm looking forward to daily treks this year.

Have a lovely weekend, despite the lockdown!

Love

Christine xx

Hi lovely ladies,

I managed to have a restful day on Friday. Like you Christine, I did my cleaning/washing in the morning then sat and read a book in the garden. Yesterday I did a 9 hour day at work. Off today then work tomorrow. My alcohol consumption seems to be creeping up so need to get that in check!!! Think I get home from a manic day at work and am treating myself but I need to get back to no alcohol on a week day! 
We are very lucky where we live, that we have the countryside on our doorstep so can get out for some lovely dog walks, although he has been limping for the past 2 days, after chasing a deer! He forgets he's 9 years old and over did the excersion! Seemed better yesterday so might take him on a short walk today.

Luckily I bought Easter eggs about 3 weeks ago so we do have chocolate here. And we have had loads of lovely donations at the hospital so I did sit and eat a whole Easter egg while at work yesterday (did feel quite sick afterwards)

Hope you have a lovely Easter!

Caroline xx

Hi there

Had a thrilling radiotherapy planning session earlier in week, pity it was at 8.45 in the morning otherwise would have been a nice time out! So am all lined up & tattooed (was quite disappointed to learn that in order to get a teardrop below the eye prison tattoo, as that's what these dots are, you have to murder someone...mind you the time may come!).

I start rads on 30th April and finish ( all being well) 21st May so we're all set.  Picked 11am as my time so I have time to put makeup on (not sure I'll remember how given its been so long!) and don't have to get up earlier than normally do.  They took a picture of my face Tues and i did point out to them that all being well will look even more gorgeous when they see me next!

Apparently I get a call the day before re maintenance during rads, moisturising & stuff I guess.

Oh and got my 6 monthly follow up meeting letter for mid-September, its currently planned as a meeting but time will tell..

Still aching on arm mainly but also seroma, oh and my legs impacted by hormone tablets, you're right Christine, will call BCN when I can be bothered (tomorrow) to check all is well in this respect & see if any physio type exercises can be recommended.

Also managed, amazingly, after 4 wks of trying, to get through to the DWP as can claim ESA to supplement the insurance payouts (that assume you get this benefit) so fingers crossed on that one.

Christine 

Hope the new exercises are doing their job and the app is recording you doing them all diligently...its like knee exercise big brother!

It sounds so idyllic where you love and makes me yearn for the north even more..far too built up and full of people (mainly idiots) round here.

Caroline

Glad you had a "good" good Friday, you deserve it, hope the book was good.  When it gets nicer I'll get back to mine...the garden is the best spot for reading, too many distractions when in the house I find.

My friends have similar thoughts re the creeping alcohol consumption, luckily I'm not yet back on it but soon....and sounds like an excellent Easter diet combined with the whole Easter egg!

Am lucky I don't like chocolate to was bought some fudge instead (salted as prefer savoury to sweet stuff), give me cheese over puddings any day - as long as its blue & stinky happy days...

Ordered a jigsaw earlier so the spare room is now my jigsaw room, that does however mean those curtains are still getting no attention whatsoever...oh dear!

Hope you and your furry beasts are all well.

X

Hi Girls,

Good to hear from you both.  I got an Easter egg today!  My daughter delivered my shopping from her Ocado delivery and included an Easter egg she had been given but couldn't eat as she is dairy intolerant,  

My new exercise regime is very Big Brother! I didn't know at first that it has a timer to make sure I do them properly. It certainly makes you scared to miss them because it has "results" which show where you have missed them.  There are things I haven't sussed out yet, too. I wish these things came with instructions!  I don't know how helpful they are, yet, as I'm still taking tablets at night to stop it hurting when I'm at rest. I'm walking ok though, so as long as I can do that I'm happy.

My brother told me he is drinking more while at home all the time. He says he'll look like a drunken yeti by the time this ends and he gets his hair cut.  I think he sometimes wears pjs all day, too! 

Fortunately, I'm not in the habit of drinking as I'm usually the designated driver when I go out with the family or friends. A glass of good wine at dinner in a restaurant and a gin and tonic as the first drink of the evening if we go to the pub is about it, except for Christmas when they come to me and the Bailey's comes out!

Well, some of my mad neighbours decided that we would sing Over the Rainbow when we had our communal clapping for carers. We've just done it and the people from round the corner are putting messages up saying well done. Well done? It was pathetic from where I stood.  It was like at church when they play a hymn no one knows and people just open and shut their mouths and the noises coming out are not exactly musical.

I got a letter about my checkup phone call and the nurse did note the cramp I have been getting in my legs since starting the Letrozole and confirmed my new appointment in July, although we could still be in lockdown by then from the looks of things.

While I was out doing the clapping, I knew Archie was up to something because he didn't follow me out,  I didn't think it could have been much, but when I came in he was chowing down on the ham and salad sandwich I had put to one side when I answered the phone earlier.  I'm hungry now and would have loved that sandwich, but I know I'm going to eat rhubarb crumble instead, or even Easter egg!

Another lovely day today, so I spent the afternoon in the garden, reading, after I'd mowed both lawns and picked rhubarb and made rhubarb crumble for my daughter, my neighbour and myself. I think it's going to change soon. One newspaper said we're in for icy blasts!  Lovely!

Take care, stay safe 

xxx

Love reading you ladies chats.  I have been there with breast cancer but was one of the lucky ones as everything was very straightforward from diagnosis, op, radiotherapy and then discharged.  Started in July 2019 and discharged February this year.  Keep strong ladies, and keep your sense of humour.  My husband and I are unable to go further than our front garden as he suffers from COPD (he is very well at the moment thankfully).  Our garden is looking the best it has for ages as it is getting tended every day. I envy you the walks, shopping trips and freedom.  We get online deliveries from Morrisons which is usually the highlight of the week.  We then spend ages disinfecting it with 'whisky' which is the only alcohol based stuff we have in the house!  Take care, stay safe and all the best on your cancer journey.

Hi Sam and Caroline, and welcome Pandy,

I'm glad our ramblings are interesting someone.  We've got into a nice little support system, here. We, all three, Sam, Caroline and myself have been going through our cancer journey at, more or less, the same time.

I'm like you, Pandy,it's all been very straightforward.  I haven't been discharged yet because  of this horrible Covid19. I have to wait until July for my next face to face checkup but apart from still needing treatment for my seroma/lymphoedema in the mastectomy site, I am doing fine and was almost feeling cocky! (Huh! Breast cancer? There's nothing to It!!)  

But today I  phoned a lovely lady, who just happened to look very much like my mother, who became my friend as we shared a ward, just the two of us, the night before we were to have our mastectomies. We bonded over silly jokes and reminiscing about our youth and have kept in touch on and off since then. She hadn't recovered as well as I had and stopped taking her Letrozole as she felt nauseous and couldn't eat when she was taking it and was losing weight. She was also suffering a lot of pain in her hip, which seemed to be the result of her artificial hip having been damaged or dislodged during her surgery, possibly when she was being moved while anaesthetised.

Today I learned that she died on Monday, not from cancer but from infection in her liver, pancreas and gall bladder, whose symptoms are nausea, lack of appetite and weight loss! The saddest thing is she might have had blood tests to find out what was wrong if everyone hadn't assumed it was the Letrozole that caused her symptoms.  Left untreated it became overwhelming and they couldn't save her.

Her funeral isn't going to happen until 29th of this month and only immediate family can attend. Her poor husband who is well into his 80s now has to self isolate for two weeks as he went in to see her before she died, in ICU, where there were lots of Covid  patients. He doesn't know what to do with himself and is grieving so much all alone.

Huh, Breast cancer? Nothing to it - just watch out for all the other nasties that can sneak up and kill you!

Stay safe, all of you!

xxx

Oh Christine, 

Thats so sad to hear :-( From what I hear at work, there are going to be more deaths from things like this. We have been saying how eerily quiet it is in the hospital and everyone is asking - where are all the cancer/heart attack/stroke etc patients! They suspect that people are staying at home because they are either too frightened to come into hospital or don't want to put pressure on the hospitals. People with lumps etc will leave it too late, surgeries/check ups are all being delayed. This might then result in people being too far down the cancer path to be successfully treated. The clinical lead for Cancer told me yesterday that you wouldn't want to be newly diagnosised right now!!! I'm just hoping that our "lack of effective" check ups is not going to of detriment to us!!! 
But, it's so lovely to keep in touch!!

Sam, your messages always make me chuckle!! When I went for my tattoos, I did ask for flowers or maybe little birds ;-) They told me they aren't that artistic :-0

But you are nearing the end now!! So soon you will have to peel yourself out of your pjs and get back into the real world - oh wait!! Everyone is in their pjs, unable to live in the real world!! ;-)

Well, off to drink my glass of Prosecco. Work in the morning. 
Take care lovelies xx

Oh Christine, 

Thats so sad to hear :-( From what I hear at work, there are going to be more deaths from things like this. We have been saying how eerily quiet it is in the hospital and everyone is asking - where are all the cancer/heart attack/stroke etc patients! They suspect that people are staying at home because they are either too frightened to come into hospital or don't want to put pressure on the hospitals. People with lumps etc will leave it too late, surgeries/check ups are all being delayed. This might then result in people being too far down the cancer path to be successfully treated. The clinical lead for Cancer told me yesterday that you wouldn't want to be newly diagnosised right now!!! I'm just hoping that our "lack of effective" check ups is not going to of detriment to us!!! 
But, it's so lovely to keep in touch!!

Sam, your messages always make me chuckle!! When I went for my tattoos, I did ask for flowers or maybe little birds ;-) They told me they aren't that artistic :-0

But you are nearing the end now!! So soon you will have to peel yourself out of your pjs and get back into the real world - oh wait!! Everyone is in their pjs, unable to live in the real world!! ;-)

Well, off to drink my glass of Prosecco. Work in the morning. 
Take care lovelies xx

Christine,

That blummin app would do my head in...its one of the many reasons why I've never succumbed to a fit bit (and can't be bothered to think/learn app stuff..I am a Luddite) luckily have strong willpower when I put my mind to it.  Although my willpower re keeping fit has the potential of being slowly eroded by the numerous aches & pains that I have, I think they've somewhat plateaued now, though that said the knees seemed to be joining in yesterday! Must be in sympathy for you.  

It will be 6 weeks post last op next Thursday when I can (??) ride my bike (per physio instruction), I've been putting small amounts of pressure on duff arm in anticipation, although there's that many people out on bikes suspect may not enjoy it as much as i used to, although yesterday's  walk was good in the rain (numbers of people down by 99%...what a surprise!).  So cycling may be in the rain, the dark (love it!) or early in morning (less likely given my inability to surface pre 8 a.m.).

I'm with your brother, minus the drinking , its nearly midday & still in Jim jams...am so glad that I bought several new sets in anticipation of surgery, obviously just doing this to get value for money from my investment!

Your neighbours have certainly created a great community there, it definitely sounds like a place I'd like to live (there will be similar in Yorks. Am sure), and your neighbours sound determined that you'll get involved (ha!) even if you can't/won't fully participate...fancy not knowing the words!  Love a good sing song, make up the words generally when in church.

That Archie!  On the plus side ham is marginally better than fat balls...I do tell off Adrian for feeding his cats ham & bacon (which he does quite regularly), he thinks he's treating them (he's a real feeder) when he's destroying their kidneys the great big muppet! My cats are also pigs and would make like Archie given half a chance, and its worse as they can jump up, luckily I'm wise to their tricks and never leave food unattended anywhere, this does however mean, with my lack of memory, that I do find somewhat deteriorated food in high cupboards weeks later...doh!

I hadn't realised that you get "discharged" - in a normal world when does that happen?

So sorry to hear of the death of your mastectomy pal, there's so much that gets missed or mistaken for something else unfortunately that could probably be treated, and, as with Caroline, I suspect with cv that this may get worse before it gets better.  It does however remind me to get round to calling BCN re my ongoing aches & pains and will do so Monday (just been too busy doing..mmm..nothing, just for a change!).  And its so sad for her family given the current situation and that of her husband...I think that lack of contact from family at end of life & reduced funeral attendance are among the worst impact of this stupid cv.

Pandy

Hi there, sounds like you've got a very good contamination system on the go, although I have a go I think there's a few holes in my routine.  And am so lucky that it doesn't matter so much in my household as it does in yours...I would hate to have to use any alcohol for anything other than chucking down my throat!  And I'm not even drinking currently.

As Caroline says I think we managed to "time" our cancer well (!!) given the new disease in town, it didn't interfere with our treatment as it is with a number nowadays.

Caroline

I did have to read the end of your note twice to check you hadn't succumbed but am glad to see you're not having prosecco instead of milk on your cereal.  Working on a Saturday eh? Poor you, I am so lucky that when I do actually work that I'm a lazy office worker so just Monday-Friday sat on my bum all day long.

I spoke to an ex colleague this week and we both agree that my return to work will be probably be a bigger shock to my system than my cancer diagnosis (wasn't that surprised or upset).  That said who on earth knows, with the cv impact, when this may actually be.  Suspect I'll be "thinking" about a return to work around July and will do a phased return but who knows what the social distancing & economic situation will be by then eh?  Only time will tell.  And luckily I've got plenty to keep busy with (jigsaws, curtains and about a billion other things as well..).

Keep well ladies & Christine I expect to see you doing your stint on The One World:Together at Home show, maybe sandwiched between Taylor Swift & the Rolling Stones...I'll be looking out for your set.

Sam X

Sam, you are a tonic! 

In my defence, I only have a Fitbit because my daughter gave me the quite basic one I bought her Christmas 2018, her specification I must add.  Christmas 2019 her brother and his partner bought her a newer, more advanced model, and, as usual, I inherited the now defunct tech. It's only defunct as far as they are concerned but I'm quite happy to receive iPhones and iPads etc that were new a few years ago.  The Fitbit does dictate what you do, though. The first thing I check on in the morning is how well I slept. It is surprising how many times it says I have been awake or restless during the night, even when I've had a full 8 hours sleep in my mind.  I'm glad I set my sleep goal for 7 hours, not 8, as I usually manage to reach that and feel ridiculously pleased when it tells me I have achieved my goal. Similarly with the number of steps and exercise. I set my goals a bit lower than I aim for just to get the congratulations when I meet the goals.  Psychology of tech!  You are a strong woman to resist!  

Caroline, The professional opinion at my hospital seems to be that the extra few months before having our checkup and, hopefully, discharge won't make much difference to us as we are, to all intents and purposes, cancer free after our treatment and recurrence or mets take longer than a few months to present themselves. Fingers crossed!

Sam,  when I asked the nurse who called me, for my telephone checkup, what would normally have happened, she said that I would have been examined, given a date for my annual mammogram and, all being well, discharged! Presumably that will now happen in July.  

You are not the only one struggling to get up before 8am, these days.  Under normal circumstances, my alarm sounds at 7am, although I have usually been awake and having a cuddle with Archie for about 20 minutes, as we wake up when the heating comes on. My daughter brings Smudge for day care, Monday to Thursday and they can arrive at any time from 7am  so I always get up when the alarm goes.  I switch off the alarm for the remaining three days but get up at more or less the same time with no problem. Now, the heating comes on and Archie comes for a cuddle and I tell him to lie down because I'm tired, it can then be another hour or more before my brain surfaces to consciousness, despite going to bed the same time as always. If Imdidnt have Archie, I probably would lose all structure to my day.  I would be reading into the small hours and sleeping during the day.

Hi Pandy,  hope all is well with you.

Stay safe, all of you, stay well!

Christine xxx