I have been " Off " for months , since before easter , I think .
Last November it became clear that a nasty tumour was impinginging on my rectal area .....and at break neck speed . I was put on Cyclophosamide tablets but to no avail .
By easter , I had been ill for months without realising it , fevers being controlled with paracetamol , but bubbling away was an e coli sepsis . In the end , admitted to local hospital who did their very best to sort me out . One week there before taken back to UCH and starting chemo ( Gemcitibane and cisplatin ) , but within a week was admitted for a further fortnight whilst we got the sepsis under control . Chemo had to do on back burner for a few weeks : came out for a week before being re admitted with a gram positive strep which had gt into my system , and , had taken up residence in my portacath ! I have had my port for over five years with absolutely no problems .....and because I am palliative , have been chasing this disease since April 2011 , it seemed a good idea to salvage the Port whilst sporting a Pic at the same time ! This meant me going daily , seven days a week for over a month to hospital to have Port fed with anti biotics ......this has included chemo days and I have never been sooh tired nor weary . These chemo drugs are now my eleventh ....and want you all to be heartened by this seeming tale of woe .
Dedicated and amazing Nursing , and we got the Port back ready for a transfusion last week ....and I have the pic , no more .
The chemo has shrunk , indeed stabilised most of the tumours again .....but sadly , not the rectal one . I fear to be graphic .....but so many have asked me ....I stress I must be unusual , I dont want to frighten anyone ....but the " thing " has broken through the rectal wall leaving a lesion, nasty , uncomfortable , tenesmus , on a low residual diet .....a stoma possibly if we cannot get some shrinkage .....
I am being as brief as possible . I am fortunate in having the most wonderful teams at UCH ....none of it is easy and life has shrunk horribly : very difficult to go out comfortably , imodium helps , as do anti emetics , but then a price to pay of days on the loo !!! Holidays had to be cancelled , theatre / trips etc ....and the future is looking problematic .
Husband however is well recovered from his stroke and has spent a full year back at school ....his vasculitis is also under control . We have been through the Mill and are still here .Our son of 27 is finding it all difficult however , aware that he is an " only " .
Broke up with his girlrfiend but at least he is working , still Fencing internationally , and in his own way very supportive !
My mother is heading for her 97th , still living alone , still obsessed with tennis and sport and biographies .....limits herself to half a choc ice a day !
You have to laugh , she still diets !
My very best wishes to you all and thanks for queries . xx
Any ideas / thoughts , I will be very grateful xx
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angeladale
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Hi Angela . You have indeed been through the mill and sounds like you are still going through it!. I haven't heard of a tenemus, is this the same as a fissure? I know something about that as my mum had one and had to have a stoma. I do hope that you find some respite from the discomfort this is giving you and that at lest there is some good news regarding the stabilisation and shrinkage of other tumours. Hopefully you are able to enjoy some of the good weather we have had lately. Do keep us updated, sending you a very big but gentle hug xx Kathy xx
Thank you for re assurance and hugs xx Tenesmus is the pulsing of the tumour , making me feel that I need constantly to be on the loo ! Reading my earlier posts , I realise that have been in contact , but just forgotten , even more worrying !!
Oh Angela, it never rains but pours. It's good the chemo shrank the other tumours, I hope it hurries up and deals with the rectal one. It must be a nightmare of worry for you when having to leave the house and from what I've read a low residue diet is not very enticing.
What does your mother do with the other half of the choc ice? I just wouldn't have the self-control to stop half-way.
Thanks for updating how you are getting on, and your family too. Eleven rounds!!!
Just about to rush out but must just send my sympathy for all you've been through, Angela. What a diifcult, frightening time!! Hope things improve for you now. Good news that your husband done well after his stroke. Hope things look better for your son soon. Sad about his girl friend.
Bless your heart! What an ordeal you have been through!!
Wow, where does the strength come from to cope? It’s amazing how the body can fight sometimes against all odds. Wish you well Angela and hope you may enjoy some sunshine in amongst the treatment
Angela good to hear from you, however rocky your latest bit of road has been. Crikey! I will be on the cisplatin gem as of next week. I’d like to compare notes / rifle your advice drawer etc. Being an only child must be super hard on your son as he faces what you are dealing with. My 2 are finding it hard so I can only imagine it is much harder for one. I do love the image of your mum and her 1/2 choc ice a day.... how does she spit the stick? Or is it one without a stick? I’ve just been to have ascites drained only to be told there is hardly any fluid there, so no idea what is filling my abdominal cavity. So faced with that conundrum I’d much rather wonder about your mum’s choc ices. I hope you take care and things keep stabilising.
Gem is exhausting so you need to be kind to yourself . It can leave you feeling very breathless , although this is my third Cisplatin , and to be honest , I have managed it quite well . Horrid taste in mouth , lots of wine gums and lemonade , mints ....taste buds all over the place .
As for the choc ice ? She eats half and puts the other half back in the freezer !!
Hi Angela, we have not yet met (on HealthUnlocked) and I am so sorry to hear of your challenges. Certainly you have been through a great deal and it sounds as if your family has had it share of challenges as well. JRR Tolkein once said (maybe he said it more than once - ha, ha) "It is not the strength of the body that counts, but the strength of the spirit." Clearly your spirit is one tough lady!
Hi Angela, I think you are very brave...even telling us. Bowel problems are just awful. I hope your team can alleviate your discomfort very soon. Such good news that the other tumours are reduced. So glad you had good nursing care. I am an only child so sympathise with your son. (A new girlfriend would be good, in time). Glad your husband is so much better. Your mother is a fantastic age; half a choc ice must be a good plan!
Please keep us up to date. Sending all good wishes xoxo 🔆🌺🌻🌷🔆
Well Angela we do tend to be tough old birds on her but I think you win the prize for the toughest!
I remember when I had my heart attack and stents surgery last summer I asked my husband if it meant I was near the end of the road. No he said you are like an old car having your old parts replaced piece by piece with new. I liked that analogy.
I’m so sorry you are going through this, I too have my problems and I know how hard things can be, sometimes you just have to look after yourself and I really hope you have the support to get through this latest ordeal.
Mum sounds like she is doing well, I would like to be her if I reach 97 dieting and obsessed with anything, bless her!
I’m really sorry to read how unwell you have been. Sepsis is just awful and recovery takes so long. I’ve got used to having a stoma and actually where Im not so well it’s actually been a help more than a hindrance
Your team sound amazing but so do you, that’s a lot of determination to keep going with the cath.
It’s hard for the kids whatever age they are, some of it is accepting we’re not super human. My youngest is 19 and the last few days her behaviour would make you think she was 12.
Sending you lots of cyber positivity and a big hug
LA xx
Great you've saved me a message and to see you back in action a bit.
I wonder how many others of us on here have only children, apart from you and me?
Also wondering whether you will be in on Tuesday? If you will be, PM me with the details. Everyone else of our merry club were in yesterday. xxxxxxx
Angeladale, wow, what a trooper you are and it's great to hear you are still very positive. Good ! I believe in life we can get through much by staying positive and having a good chuckle every once in a while. I'm glad your husband is better. Keep on 😃. I wear a badge you definitely deserve one. You are one tough cookie. I hope I can always be as strong as you. Best wishes and prayers. ❤❤Liz
Hi Angela - so sorry to hear your news, life must just seem to revolve around hospitals at the moment but here’s hoping it all settles down and becomes manageable so you can still have your theatre and dinner dates!
Did make me giggle about your Mum , mines the same dieting wise and insists on buying clothes that are a size too big! She is 87 and Dad is 89 both fit as fiddles!
Hi Angela. Just wanted to send you my love and best wishes. I’m shocked by all you’ve had to go through and full of admiration for your determination and for the skill of the nursing you’ve received. And I just loved Julia’s husband’s spare parts analogy. As for your mum - what a fantastic lady she sounds. Still going strong at 97 with the willpower to diet. May be your strength and determination is in your genes? Love Jo 🌻🌺🌼🌸🌹
That's quite a mill you've been through, Angela. Multiple hospital visits don't improve our well-being, that's for sure. What strength you have! I guess we all just deal with it one step at a time I also have the thing penetrating the bowel (sigmoid colon in my case) and they suggested low residue (so boring) and movicol, but I'm on the Rotterdam trying to shrink the beast. Your mother reminds me of my mother in law who is 102 and still wears court shoes and is on no medication!! There's no rhyme or reason.. Wishing you well as you go on. xx
Oh bless you Angela, You certainly have been through it! You are a very strong lady though (sounds like you take after your mum 😉) and I have no doubt you will get through this. The main thing for now is to get a bit more of your life back. Although none of us would choose to have one, i actually think a stoma would do that for you. My husband had one when he had his bowel surgery and once he got used to it, he coped really well. In fact when he had it reversed (after surgery for liver mets and more chemo) it was much more limiting as he had much less control over what was coming out!!! Have they mentioned radiotherapy to try to shrink the tumour? Or is that not possible because of more damage to the area? You obviously have a very good team around you at UCL so hopefully they will be able to come up with a plan to help you.
Thank you for your update. Sending gentle hugs and love to you, your husband, your mum and particularly to your son who must be finding all this very difficult.
Keep that strenght and sense of humour and let us know how you're doing.
Oh you poor thing. It all sounds awful. All I can offer is my best wishes as I haven't had any experience with that sort of tumour. I can only hope it all gets sorted out sooner rather than later. xxx
Hi Angela--so sorry to hear what you have been and are still going through, but it seems some things are improving, albeit the one place you probably needed it the most for more comfort. I am hopeful for a resolution (sounds like a great healthcare team you have) for you soon that gives you relief and allows you out again without worry. I am so sorry for all you have been through--quite the story about the port too. My husband had sepsis without anything else wrong and it was horrid. Then Strep! So hoping you get some respite and hope you will keep us in posted as you go. Big hugs, Judy
You sound like one amazing lady . There are so many of you brave and courageous women on here . I send positive thoughts and my utmost admiration to you Angeladale and all you other inspirational folks . Stay strong everyone it must be very difficult to keep digging deep along your very different journeys but you all seem to do so . Respect and big hugs 💕💕xx
Oh Angela I can’t believe what you have and are still going through. Since joining the forum 3 years ago I’ve always been inspired by your incredible resilience and courage dealing with this rubbish condition for so long. (I’m now at 4 years post diagnosis with pretty much constant treatment so have some idea!)
But this latest chapter sounds really unbearably tough, thank you for even finding the energy to update us. I’m glad that at least your husband is much better,I know I rely so much on my husbsnd’s Support and need him to stay well for his sake and the kids’ too. Does your son live at home? It’s tough, even though it’s wonderful to know i’ve seen my kids grow up (22&20 now) the last four years have been full of worry for them.
I’m sure your son is so thankful to have had you around to guide him and still here now. I’ve got to go now as my own daughter is home after finishing uni and bombarding me with questions about a job application she’s doing!
But sending you warm hugs and wishes for things to get a bit (well a lot) better
Thank you so much for your very real response . Life does go on with the demands of family life kepeing us all going ....hope your daughter fulfills her dreams xx
Dearest Angela, thank you for the update - I appreciate your candid honesty about your journey and since 2011! YOU are amazing. Even though we are all different - your experience and knowledge help me. I can only send you lots of hugs, angels and hope that your days are overfilled with love even when the world gets smaller. Sitting in the sunshine, feeling the breeze, hold hands with your hubby....and having a son (who is an international fencer-well done)...another relationship will come, in the meantime to stay in the present is the sweetest- he has you and your hubby right now. Please keep us posted. I care about you. Valerie xx
Glad to hear from you, Angela. Sorry to hear about the sepsis and that rectal tumour though, and the pain and isolation it causes you.
Even just struggling with chemo induced bowel shenanigans, I can sympathize with you and hope some solution will be found for containing the tenesmus' impact. During days four to seven following chemo, I get to experience a wonderful orange coloured diarrhea (interspersed with occasional days of constipation, which is why I'm not taking Immodium) - sorry for the graphic image. As it necessitates a 24-hr readiness for making the sprint to the loo in under 5 secs, accompanied by a very raw/sore baby bottom and followed by an immediate feeling of 'wait, there might be more...', it effectively constitutes being grounded in the flat. It's not even possible to have a somewhat drawn out phone conversation without risking having to insert an artistic pause at some point (yay mute button), and one doesn't trust one's body enough to allow visitors either. So... bye bye social life. Thank god for Netflix, nappy rash barrier cream, night lights and moist toilet paper.
I can only imagine how much worse your situation is right now, and send you plenty of positive vibes and virtual hugs to help cope. And hat off to your mom and son. Xx. Maus
Thank you for your very real understanding of the issue .....graphic or not , it's such a help .I am now keeping a food diary , and whilst on the low residual diet , small meals , high in calories seem to help ....my addiction to Chocolate milk , downed in litres , might have made things worse , so off that now !
You are quite right about phone calls too ...I have to warn people that I might drop the blower at any time !....but at the moment , if I do want to go out , it is imodium that helps , and also anti emetics post chemo , give me a bit of security for a few days ....if managed !
So , thank you again , and by veyr best wishes to you too xx
( Son , gone to look after granny for a few hours , so good for both of them )
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