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Fab Feb Rads anyone?

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Community Champion

Re: Fab Feb Rads anyone?

Really pleased to hear that.  You angiosarcoma sufferers really drew the short straw of cancer world. I remember Tat saying it took her 18 months to be correctly diagnosed & that she had letters from doctors saying ' you categorically do not have cancer' when she persisted, feeling things were not right. Look after yourself xx

Member

Re: Fab Feb Rads anyone?

Bibi , I was devasted when I found out the terrible news via an Angiosarcoma support group we were in . Tat was amazing , and her sense of humour was fantastic .  I can't believe that she has gone , but know that at least her suffering is over . We have lost three amazing women in the last month in our Angiosarcoma group , and it is so hard to come to terms with . 

 

I am currently still NED at the moment , for which I am eternally grateful , but am never complacent where this hideous disease is concerned and am always still anxious when my 6 monthly chest x-rays come round . As we all say on the AS support group FUAS , FUAS , FUAS !!! 

 

Hope you are keeping OK . 

 

Hugs ,

xxxxxx

Community Champion

Re: Fab Feb Rads anyone?

Ahhhhh what terrible news you kindly bring us Lavender. Hope you are still well m'dear.  Kerrie added so much to my life during rads, whilst undergoing a terrible treatment schedule herself.  The world's lost a wonderful human being. 😢.  Hi Angel & Brave . . and then there were three. Take good care lovelies & FUAS as Kerrie used to say. xx

Member

Re: Fab Feb Rads anyone?

Thank you Lavenderblue.

 

I have been thinking about Tat so much over the last few months and a little afraid to access the forum to read the news I wasn't ready to read but today, I finally plucked up the courage to log onto the forum and am shocked and deeply saddened at the news of Tat's passing. I am absolutely going to miss her input. So kind and so funny. However, now she is no longer suffering and rests in eternal peace.

 

AC

Community Manager

Re: Fab Feb Rads anyone?

I am so very sad to hear this news.  Tat was a valued member of the Forum family and will be very much missed.  Thank you Lavender for sharing this sad news with us and please pass on the condolences of everyone here at Breast Cancer Care.

 

Best wishes
Anna
Digital Community Officer

Community Champion

Re: Fab Feb Rads anyone?

Thanks so much for letting us know, Lavender.
I have chatted with her here & she had such irreverent sense of humour. The thread she started in 'chat' on the funny things that can happen with a bc diagnosis was hilarious
https://forum.breastcancercare.org.uk/t5/Chat-and-games/Anything-made-you-smirk-giggle-or-snort-with...
Thoughts & very best wishes to her family & friends at this time.
ann xxx

Have also posted this on the 'Dedications' thread

Member

Re: Fab Feb Rads anyone?

This is very, very sad news but thank you for letting us know, Lavendar Blue. Tat enriched our lives. I wish her family well. If you can, pass on our very best wishes to them.xx
Member

Re: Fab Feb Rads anyone?

It is with deepest sadness, that I have to tell you that the wonderful Tat sadly died last month . She was such an inspiration to so many people and will be greatly missed. 

 

Hope everyone else is keeping well. 

 

Hugs xxx

 

Community Champion

Re: Fab Feb Rads anyone?

Dearest Tat its been a long time since I logged in or even browsed the forum but something made me pop in today.

Sending you all my love and wishes x
Member

Re: Fab Feb Rads anyone?

Tat,

 

The bravest, brightest, most inspirational woman I have had the pleasure of communicating with on this forum.

Your words of wisdom, advice about parenting teenagers and funny moments will never be forgotten; even your invitation for me to pop in for a chat, if ever I visited my son at Warwick, as you live near to Warwick Uni was so generous and KIND. No-one deserves what you are now facing. It's unimaginable.

 

Soft and gently rocking hugs for you. 

 

AC

Community Champion

Re: Fab Feb Rads anyone?

Dearest Tat You deserve so much better than this. Wishing you & your family much love & strength through this most difficult of times. xxx
Member

Re: Fab Feb Rads anyone?

Dear Tat,
I am haven't been on the board in a while but had so many emails saying this thread was really active I had to check in. I am so sorry to hear your news. I can only echo what the other ladies have said already. You truly are an inspirational lady who has helped with anything you can on here. My mum had to go to a hospice in the end in Medway Kent. I hope the people at your hospice are as lovely and as helpful as they were towards my mum. There wasn't anything they couldn't do for her. You deserve the best care possible hunny.
I don't know what else to say. Sending hugs and thinking of you all.

Red
Community Champion

Re: Fab Feb Rads anyone?

Tat

 

I am a primary lady but I know that the ladies on here have been looking out for you. and the wonderful love that they have for you, you have been a gift to all of us.

 

I am so sorry to hear about the deterioration in your condition, you are such an inspirational lady and we are all better for having had you in our lives.

 

Sending you a hug

 

Helena xxxx

Community Champion

Re: Fab Feb Rads anyone?

Hello tat
We only met on secondary board briefly when you unfortunately had to join us from primary threads quite quickly but we have all been so worried about you.
Just hoping that you can get pain relief in place and all the support you need to be comfy ...
Sending you loads of hugs from all the secondary ladies xxxxx
Member

Re: Fab Feb Rads anyone?

Dearest Tat, Thank you for letting us know. It has been a privilege to know you. I will always remember your calm advice with regard to parenting teenagers. I am wishing you and your family the kindest wishes. Fondest regards, Maureen
Community Champion

Re: Fab Feb Rads anyone?

Oh Tat, so sorry to hear your news. Sending hugs & very best wishes for calm & peaceful times in the weeks ahead. 

ann xxx

Community Champion

Re: Fab Feb Rads anyone?

Sending you a big hug Tat ,I know we have only spoken a couple of times but didn't want your post to go unnoticed , hoping that the hospice at home people give you a 5 star service and you are able to have some happy, peaceful times over the next few weeks . Jill.
Member

Re: Fab Feb Rads anyone?

Hi ladies.  Just wanted to bring you up to date on my news.

 

Since late March my liver has been growing (size of tumours), so it was no surprise to discover June scans show progression in all mets and new ones appearing.  I now look 9 months pregnant and every day brings new challenges getting comfortable, moving around, doing all the jobs and things we all take for granted.  I am on regular pain relief due to the pressure of internal organs on my ribs and back and getting to the point I need top up pain relief for when the tumours get busy.

 

Onc offered another chemo (gemcitabine/docetaxel), but when I researched the side effects I declined.  I know I have weeks or days left and I dont want to spend any of them at hospital or suffering chemo side effects.  So I am at home awaiting the OT from the hospice to come and assess what equipment we can have to make all of our lives easier.  I slept on the sofa for the first time last night as it was easier to prop myself into a position comfortable enough to sleep and I didn't have to worry about disturbing my husband.

 

Family and friends are being wonderful, but it's a very strange situation to be in!  I have a faith and I'm not scared of dying, but the bit between now and then scares me - the lack of control, possible loss of dignity, dependence.... let's hope the hospice people are as good as everyone says they are!

 

 

I've talked before about my emotions around leaving my children and the rest of my family, so I'm not gong to add to that.  I am concentrating on making sure all the people who are important to me know just that, and that includes you lot!  Sharing the us and downs of rads and life around that time and since with you was a gift.  Thank you Smiley Happy

 

Love Tat xxxx

Community Champion

Re: Fab Feb Rads anyone?

AC just reporting back on 2 year on mammo. I wasn't at all anxious this year, until I got near the place, then I could feel my stress levels really rise. It was much less painful too. The dr nearly gave us a heart attack by looking at the results then requesting an ultrasound though. All clear & felt a lot of relief/joy which was completely absent last year. All in all much better. Hi Tat & Brave hope you are enjoying the sun. xx
Community Champion

Re: Fab Feb Rads anyone?

Brave just saw your post. Sad news indeed x
Community Champion

Re: Fab Feb Rads anyone?

AC my friend's husband waited in the car park when she went for her biopsy result. I felt like slapping him the next time we saw him (of course I restrained myself 😉). 3 people I know have been diagnosed in the last 6 months. It's beginning to feel like an epidemic. On radioactive boobs, I do get the odd twang now & again underneath, but sort of like a stabbing pain, rather than a tightening. I would say it's a lot better/less frequent than 6 months ago though. I also had a strong mother who did everything. My father was more laid back when we were naughty though, so they both played their role. Enjoy your Saturdays everyone. I actually came on here to find out how to get ants out of your greenhouse &, ahem, got a bit distracted. xx
Member

Re: Fab Feb Rads anyone?

Dearest Tat, Thank you for being so honest with us. My heart aches for you and your family. I am sending you warmest wishes and hope that you find strength and that you manage to enjoy and appreciate the love and affection that is no doubt coming your way during these very difficult times. xxx

Member

Re: Fab Feb Rads anyone?

Thank you so mch Bibi44 for your words of encouragement and similarities of feelings after receiving 1st year mammo results. I should have been jumping for joy; my husband felt that I should have celebrated even though he wasn't as supportive with appointments etc when I was first diagnosed; men are a strange gender.  I can't say that I have fully forgiven him for this!!

 

My mum was the one who inspired me all her life and gave me a strong foundation and her loss and the illness she died from has really hit me for six even though her death was inevitable; it just seemed to happen so quickly.

 

All the same, I'll be thinking about you while you wait for your 2nd year results and wish you all the best and that it is the results that we all want when we are on the BC journey.. Positive and nothing to worry about!! We're always having to 'wait to exhale' from here on in.

 

On a separate note; have you ever felt a tightening under the breast and between the rib area after radiotherapy. It's been 14 months since last rads and I sometimes get this ache that lasts for about 1-2 seconds and then it subsides. Any thoughts?

 

AC xx 

Community Champion

Re: Fab Feb Rads anyone?

Hi AC I just wanted to say that I felt really flat/slightly down after my year on mammo result too. It was like I couldn't quite take it in or believe it somehow. I have my 2 year one in a few weeks, so I'll let you know if that is any different. I still think about my dad quite a lot & it will be 3 years in July. It's bound to take time. I have decided to return to nursing this end & start in a GP practice the week after next. Quite nerve wracking after nearly 20 years out! xx
Member

Re: Fab Feb Rads anyone?

Tat

It is indeed a deeply challenging time. Your daughter sounds so strong and inspirational.

 

About me, well, my mammo came back, 'no significant problems identified' or words similar to that effect (My original diagnosis was from a routine mammo), and I had a temporary feeling of relief but also couldn't celebrate; I'm not sure why. I must be thankful for all positive steps but losing my mum and dad in the space of 7 months still affect me; I keep saying I should get counsellingbut never quite do it.

This past few weeks I have had severe back pain that has prevented me from working and I think this was a sign for me to rest and try to recouperate; one always feels, a need to run on adrenaline and on empty to keep things going but there are times when we must slow down; I believe this was my sign.

 

Tat, you are doing all that you can and I so hope that you will get the relief and continued support to help you through this trying time.

 

Regards to everyone else who has been on this quest that began last Feb for rads after BC surgery.

 

AC x

Community Champion

Re: Fab Feb Rads anyone?

Hi Brave Nice to see you again last week looking on top form. Yes, there is a message from Tat .. maybe reboot & log in again?
Tat, you poor love. What a grim ordeal you describe. You really are at the sharp end of all we read about NHS cuts in the media. How incredibly disappointing & frightening that things seem to be progressing so fast, but more so, that your quality of life is being impacted so much. I cried at the thought of you & your daughter having that conversation, but of course you can't all just stick your heads in the sand & pretend life is OK. Life is so bloody unfair sometimes. How is your husband coping? My woes seem so trivial in comparison. Loads of love at this most difficult of times. You come into my thoughts & prayers a lot. Xx
Member

Re: Fab Feb Rads anyone?

Hi all... I just got an email saying there was a message from Tat but when you click on the link, it says the message you are trying to achive is not available. Are we all getting the same message? Tat, I'm wishing you warm thoughts. xx

Member

Re: Fab Feb Rads anyone?

Well, it's been an 'interesting' month.......

 

First week of April I began to experience breathlessness.  I felt it was due to my liver becoming (visibly) enlarged and therefore pressing on my diaphragm, but I called the hospital and they sent me to the local A&E as there were no assessment bays at my treating hospital.  After 15 hours of waiting, mostly, and a few tests, I was sent home at 3am with an appointment for a pulmonary angiogram (CTPA).  At 8am that morning the ward phoned to say there wasn't a bed for me and I had a mini meltdown.... with my symptoms increasing by the day, I felt I'd been written off as a problem that would solve itself fairly quickly.  I had to attend anyway to have a picc fitted and they made the decision to do the CTPA at the treating hospital so all records were available there....that led to a 7 hour wait and no CTPA.  I was so tired and emotional I didn't have any fight left in me, so left with an appointment for a CTPA at 9am the following morning.  The results were fast tracked and my Onc's registrar came to the ward to see me with the results.  As I expected, no pulmonary embolism, just my enlarged liver pressing on my ribs and diaphragm, the cause of my abdo discomfort and breathlessness along with declining haemoglobin counts.

 

My OH and I gave the Reg a good grilling about beds and waiting.  He was very good and promised to make enquiries which is why I got a call on Sunday afternoon asking if I could come in at 8pm.  Duly did so and started a 20 hour wait for the trabectedin!!  I know enough about the process now to know there are numerous bottlenecks before the chemo arrives on the ward, but it's unblelievably frustrating that beds are occupied when no treatment is being given!

 

There were 2 other ladies on trabectedin in the bay I was in, so we had lots of notes to compare.  I eventually got the treatment and escaped at 9pm on the Tuesday night.  I was well enough to walk the dog on Wednesday morning and then it was like someone switched me off....I slept the 3 hours to our cottage in Dorset.  When our son arrived on the Saturday I could hardly get off the sofa to greet him.  Certainly not ticking the quality of life box Smiley Sad

 

Lots of ups and downs since then, culminating in 2 units of blood and a bottle of calcium just to keep me busy for 7 hours yesterday.  Now I have a clear week (famous last words?) before it all starts again....  My LFTs were all down quite a lot per blood results on Friday and breathlessness improved with a transfusion.  My liver is still enlarged - very obvious when lying down - but the symptoms have eased a little.  I know that things can change very quickly with the liver, and I've seen the CTPA image (largest tumour close to joining up with the one next to it) so am mentally preparing myself and the family for the inevitable.  My daughter has been having counselling at uni and started a conversation on Easter Monday where she essentially gave me permission to stop treatment when I felt the time was right.  It makes my heart actually ache, but I'm trying to focus on the mature way she is handling herself.  I know it won't be easy for either of them, but I'm confident they will be OK.  

 

Are you having any treatment for your osteoporosis/penia, Bibi?  The secondary ladies usually have denosumab injections to strengthen bones. AC, hope your mammo was clear.  I'm very envious of your skiing trip, Brave.  Hope the training is going well for the London to Surrey.  A friend of my daughter's is doing London to Paris this summer - young legs!

 

Lots of love to all xxxx

Member

Re: Fab Feb Rads anyone?

Liz, I'm very sorry about your news. AC, hope your mammogram results were good. Tat, sending you warm wishes.

 

AC, I agree with you on the value of this thread; it's been a real help throughout. And the advice from Tat re teen-rearing has been very comforting and reassuring! I'm only sorry things haven't gone well for Tat and I'm angry for you, Liz, with your latest news.

 

Love to all. 

Community Champion

Re: Fab Feb Rads anyone?

Front ray mammo = first mammo, but thanks for your suggestion spellchecker x
Community Champion

Re: Fab Feb Rads anyone?

Hi AC Glad to hear you made it through the front ray manmo. Very nerve wracking. It made me quite anxious in the run up to mine, although fortunately the Marsden do same day results. I take strength from your saying, but also Tat's 'will it help if I worry about it', because this week I got shingles on Monday & today have been told the chemo has given me osteopenic hips & an osteoporotic spine. Hard to stay chirpy, but I am sitting in the garden listening to the birds & telling myself nothing has changed since yesterday, other than that what I know. Love to all xx
Member

Re: Fab Feb Rads anyone?

Hi Everyone,

 

Tat, it's so hard to find the right or shall I say, most appropriate words but please continue to dig deep and find the inner strength that is still within you, even though there are difficult days that will prove overwhelming. My heart and soul is with you as you have provided much wanted positivity over the months since this thread has been in action and I pray for you every day that this treatment will be the one that your body responds more positively too.

This journey is such a difficult one, full of ups and downs BUT hope is what we are left with and we must hold onto it as tightly as we possibly can.  You, along with Bibi and Bravescholar have been a font of knowledge mixed with humour, in much welcomed measures, over the months and for that I will always be grateful; you kept me hopeful and inspired through months of uncertainty after rads and the after effects.

 

Most recently, I too have had some further anguish waiting for the results from my first yearly mammogram; Bibi, I know that feeling of dread and worry sitting in the waiting room at CUH and the results afterwards. 

 

I am trying to repeat the quote below as my daily mantra.

 

I hope the following will help, without sounding too preachy:

 

  “Keep your thoughts positive because your thoughts become your words. Keep your words positive because your words become your behavior. Keep your behavior positive because your behavior becomes your habits. Keep your habits positive because your habits become your values. Keep your values positive because your values become your destiny.” 
― Mahatma Gandhi

 

Best wishes and keep in touch.

 

ACHeart

 

Member

Re: Fab Feb Rads anyone?

Hello Tat, I'm so sorry. You'd think we of all people should know what to say but words seem so inadequate. Life sometimes seem very unfair and random and this is most certainly one of those times. I'm wishing you the best that can be wished for you and am sending you very, very warm wishes. Take care, Tat.

Community Champion

Re: Fab Feb Rads anyone?

Oh Tat, that really stinks.  Must be really hard to keep your spirits up, but pleased to hear your sense of humour is still intact, despite the disappointing progress.  Enjoy the 😎weather again today.  Take care of yourself Lovely xx

Member

Re: Fab Feb Rads anyone?

Thanks, Carolyn.  It is hard, but I'm a tough bird Smiley Wink  A couple of school friends came for lunch today and we sat outside in the glorious sunshine and laughed, mostly inapprpriately, at the sh!tuation! xxx

Community Champion

Re: Fab Feb Rads anyone?

Hello tat
I have been asking how you were as we hadent heard from you for a while.
I don't know what to say really but hopefully this new treatment plan will help.
We always expect our oncologists to produce something magic from their medical bag but sometimes that bag begins to empty.
Please keep in touch tat ..xxxxx
Member

Re: Fab Feb Rads anyone?

Hi ladies.  Thanks for your updates, I'm pleased to hear you are both doing well on the whole.  

 

I wish I could say the same, but I've just stopped doxorubicin after 3 cycles because of progression of my liver mets.  The largest is now over 8cm and I had started to have symptoms, so the CT results weren't a massive surprise, but the news still hits like a runaway train.  The next chemo is trabectedin which is administered over 24 hours so that means a stay in hospital and introduces the bed availablilty variable into a life already choc full of uncertainties.  I'm trying to get my head around yet another set of side effects and restrictions on my life - back to weekly blood tests as trabectedin is very tough on the liver and kidneys. If trabectedin doesn't work we're left with clinical trials.  Just a shame there aren't many for sarcoma and not a single one open for angiosarcoma!  If trabectedin is too much for my liver and I get jaundiced, it's game over in treatment terms.

 

I knew this point was coming, just shocked at how quickly we ticked off the chemo options and not even a whiff of a period of NED or a planned treatment break Smiley Sad  Breaking the news to our children and my parents was the hardest thing I've ever done - I can't think about it without crying.  Anyway, we're concentrating on making the most of the summer and trying not to think beyond that!  I'll try to remember to pop in here from time to time - I was using the secondary boards regularly while on taxol, but stopped at the beginning of the year.  The number and range of treatment options for secondary bc only served to highlight how few I have and I found it wasn't helping my mental health to be reminded of that constantly.  I sometimes put stuff on FB, so if you use it and want to stay in touch, PM me your details and I'll send you a friend request.

 

Sorry this isn't a more positive post - kind of sums up where I am at the moment.  Tat xx

Member

Re: Fab Feb Rads anyone?

Logging in to say hello to everyone but especially to Tat. Thanks for the prompt, Bibi. Along with Bibi, I'm hoping the doxorubicin is doing a good job, Tat.

 

Things are going fine with us. Hubby, boys and I had a lovely week's skiing over half term. Nice family holiday, with plenty of time together but plenty of opportunities for the boys to go off on their own.

 

I had my fourth cycle of Zometa today; remember that's to reduce risk of recurrence in bones and to reduce risk of letrozole-induced osteoporosis. Been six months since my last one. Felt very strange to be back in a chemo unit.

 

Still putting lots of effort into keeping fit. Doing the London Surrey 100 mile bike ride at the end of July for Breast Cancer Now. A big challenge but one I'm massively looking forward to.

 

Wishing everyone warmest wishes.

 

Community Champion

Re: Fab Feb Rads anyone?

Hi Tat

You came into my mind this weekend, so I thought I would pop in & see how everyone's doing. I hope you are getting on OK with the doxorubicin & that your SEs are not too unbearable.  Most importantly, I am praying it's doing a better job than the Pax.

Brave hope you had a great time skiing.  Just back from Abu Dhabi this end for HB's 50th.  Weather a bit mixed, but lovely & relaxing.  

Angel I had to go to CUH the other day for a scan (nothing BC related, just a LT complication of chemo), for the first time since I was diagnosed, & it rather freaked me out to be back there. It was a really visceral reaction.  I guess the trauma remains with us, somewhere deep inside.

Love to all

BBx 

 

Member

Re: Fab Feb Rads anyone?

Well, Christmas happened!  So good for you to have your boys home, AC, despite the teenage fridge-emptying trick they all seem to excel at Smiley Wink  Hope everyone else's was the right mix of chaos and fun!

 

We had a lovely time playing grown up 'sardines' in our little cottage! So many laughs and, most importantly, the food was delicious (even if it was the usual constant round of prep and washing up over 5 days!). Boxing day was spent walking on the beach in glorious sunshine and we visited an old family friend in Bournemouth on Wednesday.  I really couldn't have asked for a better Christmas if I'd written a script for it Smiley Happy  The kids are driving back home today, so anxiously watching the weather and traffic reports!

 

There was a slight sense at times of the elephant in the room - will I be around to celebrate next Christmas.  I've talked about it with my husband and close friends, but no one else in the family, although I am sure they have all considered it....

 

Thanks for the heads up on doxorubicin, brave.  I had only looked on the secondaries boards so had missed that adriamycins are used for primary bc.  I had the option of combining it with ifosfamide, but that involves a 4 day inpatient stay each time because it's so harsh.  For me it's quality of life every time and a minimum of 4 days in hospital each cycle doesn't tick that box....

 

Lots of love to everyone and best wishes for a very happy and, of course, healthy new year Smiley Happy xxx

Member

Re: Fab Feb Rads anyone?

Thank you Tat. I will certainly contact you if and when I am up at Warwick again. It would be great to meet up.; such a kind gesture.
Normally my husband takes the boys to Uni; Oxford and Warwick but if I ever have to do it or if I visit my son, I'll keep your invitation in mind.

Thank you.
AC
Member

Re: Fab Feb Rads anyone?

Hey Ladies,

 

It's been a different Christmas without mum around but overall, the period so far has been restful. Christmas day was tiring with the usual cooking and preparations but it didn't feel the same for me as in previous years; even down to buying presents and all that; I felt numb and not as involved as in previous years. My sons are home and have doubled the food bill after both of them being away since beg of Oct. Great to have them here all the same. 

 

My youngest, who is at Warwick needs to arrange accommodation for his 2nd and 3rd year at Uni; Leamington Spa seems to be the favoured area; I don't know much about anywhere else for housing. However, as well as this worry, trying to wisely advise, young mind/second born about trying to halt the frequency of socialising until 3 or 4am in the morning. How do you control a teenager of 19yrs? You can't but you certainly do hope that they are sensible enough to do the right thing while enjoying themselves and our hearts are truly in our mouths every time they go out. Away at Uni, God knows what they are getting up to. So far we have had assignments marked at 2.1 or 1st deg levels but it is his first year. Hope is all we can wish for our young and curious teenagers, soon to be adults.  HOPE. 

 

None of us are guaranteed an eternal existence so making the most of the life as we know it IS really IT!!

Last week, I received my follow-up mammogram scan letter so I have that to look forward to in Feb. I have mixed emotions and can only take one day at a time; completing the checks as advised, fortnightly. The only thing I can do is check myself even though the last diagnosis was from a mammogram and not an actual lump or change to breast!   It's very hard to know for sure, what lurks within the body, until the machines and experts investigate. I am looking at going away on holiday, in the summer,  but cannot book anything until after mammogram due to possible treatments/hospital visits etc.   

 

All that is left for me to say is I am glad to hear that you all mostly had a great Christmas with people whom you love and that WE all must look forward to 2017 with increased vigour and energy our bodies may permit us to deliver.  Grab life by the scruff of the neck and demand that it allows you every ounce of time to enjoy it. 

 

HAPPY NEW YEAR EVERYONE

To the strong and committed out there, fighting the good fight of life.

To Tat, Brave, Bibi - Everyone

I applaud ALL of you xx

 

Best wishes, Woman LOL

 

AC xx

 

Community Champion

Re: Fab Feb Rads anyone?

Hi all

 

Really lovely to hear from everyone.

Tat I would just get the Emend from day 1.  It makes a huge amount of difference to how you feel.  I think I still have one knocking around if they refuse on the first round (some trusts make you 'earn' it).  I had epirubicin, which I think is same family of drugs.  It was a bit like morning sickness & eating dry biscuits or ready brek  little & often helped me.  Xtrmly sorry to hear the PAC didn't do the trick.  On a positive note, on the 3 weekly cycles,  we all felt pretty well in week 3 & able to resume normal life, so Dorset trips would definitely be doable if you have the inclination. Actually we usually felt ok in week 2 too, but your neutrophils are low, so you need to germ dodge. 

Brave sorry to see you caught a bug & hope you're over it now.  Your post made me laugh.  One of my Scottish mates at uni always used to say that to me when he was trying to lead me astray & onto another party at 4am when I wanted to head home to bed.

AC good to hear from you too m'dear. Must be funny having an empty nest, but it sounds as if you have found plenty to fill your time.  Christmas will be odd without your mother, but we raised a glass to dad last year & no one sat in his chair, so he was still with us really.  Brave I guess you too with your dad.  Can't believe nearly a year has passed by already & what a year it's been for us all.

 

Wishing you all a wonderful Chistmas & I hope & pray that 2017 brings an easier year for all, but most especially you Tat.  Big hugs all round. xxxx

Member

Re: Fab Feb Rads anyone?

Hi tat,

 

Good to hear from you and thank you so much for your reassuring words on teenagedom and parenting. I really, really appreciate that. 

 

The hip pain is indeed subsiding. Thanks for the good wishes on that front too.

 

I'm massively keeping my fingers crossed that the doxorubicin works for you, tat. I had four fortnightly sessions of doxorubicin & cyclophosphamide in combination followed by four fortnightly sessions of paclitaxel on its own. If the antinausea meds they give you initially aren't strong enough, demand Emend (aprepitant).

 

It must be good to have your family around you at this difficult and uncertain time. I'm hoping you will be able to take strength from them. Sending you very warm wishes now and for when the next round of treatment starts... and good luck in Dorset with the Aga!

 

Brave x

Member

Re: Fab Feb Rads anyone?

Hi all Smiley Happy  Your blog post dropped into my inbox today, brave, and that made me check on this forum.  I am sooo glad your mammo was clear and your consultant organised a bone scan pdq to put your mind at rest.  It's a relief that it's 'only' arthritis - plucked that one out of the 'Things you thought you'd never say until you had cancer' booklet that I seem to use quite a lot!  Hope the ibuprofen helps get the discomfort under control and a longer term plan is sorted for you.  

 

I had been mostly hanging out on the secondaries part of the forum while on paclitaxel, but scans at the end of Nov showed progression in all existing tumours (no new ones, thankfully), so I haven't had Taxol since 22nd November.  I will start doxorubicin in January, not a chemo that seems to be used for bc, so I've been using the sarcoma FB groups for info on side effects.  It'll be a much harsher regime, delivered every 3 weeks, for a max of 6 doses.  I'll be scanned again after 3 cycles.  If it works I'll have the second 3 cycles and if it doesn't there's one more chemo - trabectedin - to try before we're in clinical trial territory.

 

We found all this out on 2nd Dec and I have been trying to climb out of the hole since then.  Every bit of bad news seems to be harder to bounce back from, especially when one of the 3 chemo options (and the most manageable in quality of life terms) has been ticked off the list so quickly.  On a brighter note, our daughter came home from uni a week ago and my son arrived home today and has the whole of the Christmas period off!  We are spending Christmas in Dorset so I've been keeping busy planning the cooking of Christmas dinner in the Aga and hoping McDonalds is open in case it doesn't work out! 

 

How are you, Bibi and AC?  Be good to hear your news

 

I hear your worry about your boys, brave, the teenage wing spreading is a terrifying time - especially because I remember what I got up to!  I would say, though, from a personal and professional viewpoint that all the good stuff you've put in over the years still counts.  Try to keep the lines of communication open and keep having fun as a family - young people from families where parents are interested and spend time with their kids are far, far less likely for the 'experimentation' to become a crutch or habitual coping mechanism.

 

Wishing everyone a happy Christmas with the people who mean the most to you Smiley Happy

 

Love, tat xx

 

 

Member

Re: Fab Feb Rads anyone?

Hi everyone! AC, that's bizarre. I had made a mental note to log in today and make a post asking everyone how they were doing.

 

Tat, in particular how are you? I don't know what to say other than say I'm sending you warm thoughts.

 

I'm loaded with a cold, but had a clear mammogram and ultrasounds on Monday (my 1st since my op last yr on Dec 19). I mentioned a pain in my hip that had been coming and going for a couple of months to the consultant who gave me my results and he whisked me in for a bone scan two days later. Said he'd been in this game long enough to know not to leave anything to chance. It was all clear on the bc front but I have some early arthritis in my lower back and knees that could be causing the pain in the hips. Am on high-dose ibuprofen for a week to try and reduce inflammation. Given what it could have been, I guess I should be grateful. I'm still playing tennis and running, work is good and generally I've been doing ok but I am still finding things hard emotionally.

 

My boys are proving difficult.There's a lot of, how should I put it, experimentation and partying going on. I'm worried sick.

 

I'm looking forward to a quiet Christmas.

 

I'd love to hear your news. xx

Member

Re: Fab Feb Rads anyone?

Hello Everyone,

 

Are we still communicating on this link? Has someone started a new link? It seems that we haven't had as much communication since October??

 

Let me know.

 

AC

Community Champion

Re: Fab Feb Rads anyone?

AC lovely to hear from you.  I wondered how you were getting on, so pleased to hear you enjoyed your holiday & are adjusting to your children being at uni.  Keep strong.  Brave lovely to meet you yesterday. Tat hope you are getting on OK. Have a good weekend all.  xx

Member

Re: Fab Feb Rads anyone?

It's SO good to hear from you, AC!  And especially good to hear such a positive overall outlook in spite of the unbelievably difficult year you've had.  If there's one thing I've learned, it's not to look too far ahead (I'm not very good at this, but I'm working on it!) and celebrate little and often; it really helps me to actively look for the good in life - there's plenty out there that I probably didn't acknowledge before this whole cancer **bleep**uation descended!

 

Warwick uni is less than half an hour from me, so if you ever need somewhere to stay or want to meet for a coffee when you visit your son, just say the word.  It is a very good uni and I am glad your son is enjoying it. The empty nest is a weird feeling, isn't it?  I keep telling myself I've done my job by equipping my kids to live independently and, most of the time, it works Smiley Wink  Sometimes I feel frustrated about being tied to the hospital for weekly pallliative chemo (not how I thought we would be spending our time once the children were living away from home!), but we're trying to make the best of it.

 

Lots of love for you as you sort through your mum's things and deal with probate; such a difficult time anyway and so much harder if family are being awkward.  We have just signed new Wills and are in the process of collecting signatures for Lasting Power of Attorney over financial and health and welfare for me.  I am the kind of person who needs to have that sort of thing signed and sealed, but the discussions have been surreal at times.

 

Anyway, I have just placed an order on that well known auction site for lots of silly hats for Christmas.  I will have to wear something on my baldy head, so decided to make it a 3 line whip (no one can argue with the terminal cancer patient!) that everyone wears a daft hat AND walks the dog wearing it Smiley Happy

 

Lots of love to all xxxx

Member

Re: Fab Feb Rads anyone?

Hi Ladies,

It's been a long time. A bit of a long email.

 

Sorry to hear some of the not so good news from Tat and BiBi,Brave - I hope that you are finding the strength to dig deep and carry on; somehow, I know you ladies will do everything in your power to have as enjoyable a life as possible and smile through the pain and disappointments; with the faith of more good times than bad to come. I am thinking that some day, I am likely to have to deal with bad news again as once diagnosed, the reoccurrence of cancer is not too far around the corner.

 

Jamaica was lovely. I had the best time. The family had a great time. pool aerobics, swimming in the sea, lying in the sun (covering rads area) and just lounging about was just what I needed. The mosquitos loved me but the all inclusive and hot hot weather made up for it.  My youngest son managed to get his insurance place for Uni and is now at Warwick; just missed Cambridge - he needed one A* - he got 3 As.  He's loving Warwick - I must admit it is a lovely Uni. First born has just started his 3rd year at Oxford; had his 21st birthday back in September. Life is going very well. Now just hubby and I at home after 21 years!!! weird, this new phase. The house will now get alot more attention and streamlining. We're ready to tackle the loft. I've still got presents up there from when I got married 23 years ago that have never been opened. Terrible really. I live in a small terrace.

 

I am still grieving for the loss of my mum in June 2016 and still sorting her things out; bagging up for charity but there is more to do. Working as a teacher is difficult to find the time when you want it, to sort things out so next week, we break for half term and a week to begin some serious house clearing.  It is also nearly one year since my father passed away; October 27th. This has been a very stressful, changeable and eventful year.  

 

The Will is still not sorted - other members of the family just not acting how they should. Executors not in agreement but hopeful that this will get sorted v soon. Nothing like a death to see who people really are. Awful to say but in my personal experience and many friends too, it seems rare for affairs to just be sorted out and everyone is amicable.

 

I am still finding that the breast that was operated on and rads is still painful in parts and tissue still feels firm/lumpy unsure whether this is normal with tissue damage. Menopause seems to be causing more joint pain and the other symptoms, so going through the change, in a different way.

 

All I can say at the moment is that I live each day at a time, check myself at least every fortnight for changes in the breast and try to enjoy and make the most of LIFE. It's what I now endeavour to do and my mum would be proud that I am looking after myself more.

 

Keep in touch ladies. I am always thinking of you as the FFR (Fab Feb Rads) friends. You have all, in different ways, cheered me up and guided me along this sometimes dark and unknowing journey after cancer pays its first visit.

 

Take great care of yourselves.

 

Best,

 

AC xx