Well ....where to begin ? So many of you have asked after me , and it is true to say that I have been keeping a low profile .
Life has dealt us a rotten hand since November and keeping my head down has been my means of survival . Also , whilst I do read messages everyday , I often feel that I have , these days , little to offer which is new .
In November , my husband had a biopsy for prostate trouble , enlarged on MRI , highish PSA , and all came to naught : BUT prophylactic anti biotics didn't work and he developed Sepsis within 24 hrs of biopsy and we almost lost him .
Brilliant doctors ( some of whom I had taught ) , brought him back from nowhere .
Over Xmas and New Year ,he was at home but fighting various infections and by end of January it was clear that his Vasculitis of six years ago was back wit a vengeance ,
( then , two weeks before I was diagnosed with OC ) . Horrible sense of deja vu ....
he came out of hospital with same meds as then and we set to ......
after four days at home not well , he had a bilateral stroke , clots on either side !
He was back in hospital for another fortnight . Big son living at home with girlfriend , was a great help but didn't really cope emotionally .
Very few signs of the strokes but community tea have been very good .
The vasculitis however has left his hands without sensation other than pain , and his left leg/foot , floppy . Feet dreadfully painful . He is full of all sorts of drugs !
We are alive thanks to modern science and the NHS , without doubt .
Meanwhile , I have been on Pembolizumab, Phase 2 trial since last August .
For those of you "meeting " me for the first time , I have had five routes of chemo in six years and still going strong !
Noting lasts forever , and throughout March I had severe bouts of nausea and ghastly stomach , which was thought to be colitis , a side effect of drug . Sigmoidoscopy proved negative as did biopsies .
Last weekend , it all kicked off again , but this time with a rash that was so bad , I was taken into hospital as a emergency !!
Poorly husband at home , me in UCH ....96 year old mother in melt down ....life does not get easier . Huge amounts of fluids , anti histamines , diprobase , and I am back home . Big son getting used to dramas and now back at his workplace .
Again , astonishing care at UCH , private room ( in case I was infectious and , for my dignity ! ).... "Clearly , a drug reaction" and in a few weeks , I assume a conversation as to whether I remain on drug or , a reduced dose . CT scan has shown reduction of disease with some bits growing , a controlled CA 125 ( 45 ) so I can foresee a watch and wait " but only time will tell .
This is a hasty post but by way of a catch up . How do I cope , everyone asks me ...
We got ill together . Our son was at Uni and giving up was never an option .
WE are very lucky to have had fabulous teams to care for us , from hospital porters , to cleaners , right up to Profs . I have dreadful anxieties as we all do , of painful death and dignity gone awol ....but in the face of adversity , I just wont let the buggers win !
I am also a team player and see myself as part of the solution . I dont do wacky foods and diets but am sensible .
AND I don't believe it's over until the fat lady sings !
My very best wishes to you all and apologies for having been away .
Written by
angeladale
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Thanks for taking time to update. All the cliches come out of f the woodwork in such circumstances but they are cliches for a reason.... you both have each other and I guess such a bond does not come along often in life. I empathise with the son being at uni situation and what that signifies and requires... I have one at uni and one preparing for uni. I absolutely must stay to see those episodes play out to the end if at all possible....
I don't know how it must be to know as much as the doctors treating you, or nearabouts, and can't imagine whether it is a blessing or a curse or a bit of both.
Good to hear from you. Much fortitude and hopefully some golden moments in among the nettles and thorns.
We have had some good holidays in the last few years ...Son got degree and his Masters this year , so back on track . We dont stop worrying about them , do we ?
What a really horrid time you have/are going through. When the NHS works isn,t it brilliant. I hope you and your husband continue to get the best possible care available and I hope the fat lady doesn,t sing for a very, very, very ,very long time All the best Chris
What a wonderful and strong lady you are ,no matter what life has thrown you and your family you have come through it all . Sending you and your husband a virtual hug
Am glad you have had good care through your difficult times. Must have been a hard time for your son . I have a daughter at uni so appreciate how difficult it can be. She didn't want to go back when I was diagnosed and thankfully is now at the end of her first year and I am still here .
Sending you both love and best wishes for future treatment and hoping you have some good days ahead to share together.
You have had some challenges to deal with recently! I hope you and your husband feel better soon! You should ask LA to start dreaming about the fat lady too! She can kick her and her black eyed man into oblivion!!!!😂
Oh my, you really have been through some! I have to agree with you regarding our wonderful NHS my lovely husband had 5 strokes between the age of 39 & 41 due to a very rare issue his last one put him in the JR for over a month three of his strokes including the last meant he had to learn to walk again and learn how to be him but just a bit different, my diagnosis came whilst he was still recovering and he to got a diagnosis but no protocol as to what his treatment could look like to due to being so very rare. Long story short they decided on a low does of chemotherapy for him so for the first 4 months of my battle we played tag with the chemo chair my consultant and that of my husband helped where they could around when we had infusions, scan appointments so we were well enough to attend each other's - we would have one week where we were relatively normal as it were... Our poor daughter mind watching her dad go through all that then me was tough for her but she was amazing and were through it fingers Xd for a long while yet. He's now 44 and no stroke since 2104.
Blimey . What a time you have had too and so young for all this crap . Yes , you would understand what it's all like . Michael also on a form of chemo for his Vasculitis , whilst I have been on mine ! Yes , he is a bit not like his old self and that makes it difficult as well .
44 is so young and I wish you both many happy years and healthy ones to come .
Angela.........first time I have "met" you.......hello! Oh my, I am so sorry you and your husband have been going through such a terrible time, you must think "what next". My life has been like that for the last 23 years . I hope that very soon you both turn a corner, you very much deserve to. Lots of love. xx
Angela I'm sorry to read about the awful time you've been having. I hope you both feel better soon. It's tough on everyone at home when things aren't going to plan. It's good to see your fighting spirit coming through that I remember from when I first joined and that fat lady has been muzzled again.
Wow!!! You are one very strong woman!!! I'm sorry that you have gone through all of this. It just isn't fair. You will be in my thoughts and prayers. Kim xx
Oh Angela, I knew about your and your husband's problems these last six months as we've discussed them, when we've met as patients. But the new rash and the stomach problems returning. What a nightmare it must have been for you. I hope you're allowed to stay on the drug.
What an inspiration you are and my attitude is the same, I look at my 18 year old daughter at Uni and having seen my son graduate refuse to let this bastard disease ruin her uni experience, so as you say, there is no choice.
I am so sorry your poor husband is having such a terrible time, it must make it so very much harder for both of ou worrying about the other.
Oh my, your family has been through the mill. Hope you have turned the corner and life takes a more peaceful and steady path. All the very best to you all. Sandra xx
I never cease to be amazed at some of the situations you extra brave ladies have coped with. We all think 'we have been through it' but your bravery puts everything into perspective. Sending hugs and hoping for some calmer times for you xx
Hi Angela what a tough time you've been having, wishing you and your family best wishes and to,stay strong xxx
What an inspiring and strong woman you are .You give strength to those of us who need a kick up the rear end .I wish you and your husband all that you wish for yourselves .
Hi Angela, thanks for taking the time to update like others I'd wondered where you'd gone, really sorry to hear what a rubbish few months you've had. But relieved to hear you and hubby are still fighting and going forward together. That attitude of 'don't let the buggers win' is so crucial, it can also be exhausting, but like you I feel there isn't an option. (Daughter of 21 at uni and son re-taking A levels to hopefully go in autumn. Since 2nd op in Nov 15 I've been on continuous chemo and avastin) So great that your son has his degree and Masters! That must make you so proud and happy to have seen him get there. Hope that UCH can come up with another plan - if it's watch & wait maybe it will allow your body to detox enough to go onto another drug in a bit?
Thank you , Madeline . So many of us seem to be in the same boat , kids at Uni , elderly parents ....but it is a life , nevertheless !
Yes , I am very proud . As an only child of an older mum , he's struggled but got there !
You are also right about detoxing after all this time . From 2015 August , when I finished Cisplatin , to August 2016 , I was drug free and that was wonderful .
Lots of maybes to consider . Thank you for cyber hugs x
phew. what a journey you have been on and indeed are still on. I send you my best wishes and hope that you have the strength to carry on as you are doing. xxxx Jeanette
HI Angela, So sorry to hear about the woes that you beset you and Michael along with the impact on the family. How much does one have to bear!!!! But you are such a strong person/warrior and I'm sure you will not "let the buggers win". Best wishes.
Dear Angela-Wow where to begin. You are such a strong woman and an inspiration to us all!! wishing you the strength the keep on with this journey and hoping for a light at the end of this tunnel for both of you. You are a trooper for sure. Hopefully by the time summer rolls around you and your hubby can relax in the sun drug free! Hugs to you both!
Thanks for catching us up on what's been happening for you. What a time you've had. I agree that the wonderful staff really help. I've had great care on and off over the last 6 years and got to know them a bit. They are wonderful.
Angela you have had a terrible time. And it is so hard for family around us. To watch us when we're ill. My youngest was at University when I was at my worst. When he should of been studying he was at home helping to look after me. Back and fore to York. How he managed to get his degree ,it amazes me. But his tutors were very understanding. I hope things get better for you and your husband. Summer is just round the corner. Lots of love xx
thank you for letting us know how you are doing. You and your husband have been having a tough time. I do hope that life will get a little easier for you both. So glad you have good community nursing care, it is so vital.
Your CA125 isn't too bad, I'm sure, like me, it has been an awful lot higher than that. Good also that some tumours have reduced. By being on that drug trial you are allowing valuable knowledge yo be gained about the drug that will in time help some of us on this site in due course, so a big thank you.
You are one strong lady who has given great support and advice to many on here, including me when I was a newbie.
Oh my goodness what an awful time you have both had. You have my full admiration and I envy your strength I think I would have crumpled. Sending love, hugs and hope for better times ahead.
This drug , Pembrolizumab ( Keytruda) is already licensed for lung , head and neck , and really successfully for Melanoma . It's being tried on everything , I think .
I was lucky to fit the bill for this trial and to be at UCH with a top Prof . After four years we were getting desperate for a drug that I wasn't rejecting .
However , I was also very aware that hopefully this will feed back all sorts of information for others . When you are on a trial you are watched closely . For example , they knew that by nine weeks , the thyroid can be affected ; low and behold , I was a textbook case , and am now on thyroxine ....
When the rash became a nightmare , the A n E oncologist told me that they had seen this reaction many times in the now licensed drugs ....so , it's all a balancing act , isn't it ?
Just want to wish you all the best,I'm sure you have better advice and wishes from the other ladies,life can be a bitch,but you sound so strong and focused.I am not the same on a scale of 1 to 10, but I am ok, with a husband that has Parkinsons,slowly getting worse,so I have all empathy with you and want to congratulate you getting through and hope things improve,
Wow Angela you are amazing both you and your husband need a well deserved break from all this lot! I hope you get your watch and wait and enjoy the time without being treated. sending you and your husband a big hug xx
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