Thankyou so much DBNO
I would so like so much for you to mention how much she ment to us I have missed her so much since November.
Love Rose xxx and (((((hugs))))) from me
I dont believe this is happening…first Wolfie now Bumpkin. Yet again she was a true inspiration to me. It was due to her i followed up leads on treatments etc which have most likely helped to keep me here…i will miss her so much. Thanks DBNO for letting us know. Heartfelt sympathy to Bumpkins family and friends. x
Hello LAdies, dont really feel like posting at the moment in light of recent developments but think it only fair to let you know how i got on with electrochemotherapy as you have all supported me along the way.
Had the treatment on 3rd March.Had general anaesthetic and was in theatre for about an hour. when i came round i was in so much pain all i could do was cry…think a lot of it was the fact that i had been waiting for so long and pinning a lot of hope on it working. I had loads of morphine and was ok for a few days. After that i can only describe the next few weeks as a total nightmare. The pain has been worse than my bilateral mastectomy and diep reconstructioon. I had every area done (abdomen, chest and back) as well as a node in my neck which had appeared a few weeks previous (which leads me to believe cape isnt working, especially as my TMs have been rising steadily). The wounds are very sore and itchy and have lots of leakage which is horendously smelly …sorry to be so graphic. I went back to hospital last Tuesday for re dressing and was told it was all perectly normal. I go again tomorrow to se the surgeon but i’m not sure this is all ‘normal’…will just have to wait to see what he says. All i know is i cant remember having so much pain or being so ‘low’, all componded by the news about Wolfie and Bumpkin. I know they would want us all to remain positive and keep fighting so thats what i’ll try and do. I’ll let yo know how tomorrow goes. Much love to all. xx
All I can say to you is hugs and kisses and I know everyone is thinking about you. Stay strong and hopefully this treatment will start to kick in soon and you will benefit from all the painyou have had to go through.
Hugs xxxxxxxxxxxxxxx
Dear Stresshead
I knew you were not quite right I am so sorry you are going through it right now and can only hope it gets better. Sending ((((hugs)))) and love.
P.S just seen pm will send one back
Hi Stresshead - sorry you’re having a hard time. Just post if/when you feel up to it. The loss of Wolfie and Bumpkin in such a short time certainly has knocked me for six and I think of them constantly. We’ll be here but will be thinking of you whether you’re posting or not. Wolfie and Bumpkin certainly would want you to stay positive and keep fighting - as do we all. We right here, spurring you on. The treatment likely just needs a bit of time to begin to feel the benefit, but it must be very hard to cope with the severe pain.
Mo - I read the other day about a lady who had radiotherapy who thought it hadn’t worked at first and was in great pain but then found that it took away the pain, given time. I wish I could remember the thread.
Hang in there both and hopefully it will be very effective, very soon.
Hugs to all the ladies.
(((((XXX)))))
Ladies, thank you so much for your kind words and encouragement…i really don’t know what i’d do without you all. A quick update on yesterday.
The nurse took all the dressings off and when the surgeon came in he put some gloves on and just stared…which really freaked me out. I asked if this was normal and he said everyone reacts differently which again didn’t fill me with confidence. Then he said words to the effect of ‘its too early to say but that is what i would expect with the tumour being killed’…i could have kissed him!!! He did then say i would need more treatment but they would give me extra painkillers next time. I really didnt want to go through this again but like us all, if it shows a positive result then we’ll go through anything.
They have given me iodine dressings and skin cream and aslo prescribed oromorph so hopefully things will improve. He said the treatment takes 4-6 weeks to show an effect so everything is crossed in the meantime.
I am also back at the trials clinic next week so i’ll update you on that too.
Thank you all again for your support…you are all true friends. Much love xxxx
Oh Stresshead
What great news at last something to feel positive about I am soooo pleased for you. Sorry you have to go through the pain but at least they have given you something to help with that and the cream and iodine for the soreness. It is certainly a treatment to consider if you are lucky to get it. They seem to now be helping you and about time.
Big Cyber ((((hugs)))) :heart:
Yay, Stresshead - ditto Barton and Marirose’s comments - that sounds like a very positive response, particularly if it generally takes about 4 to 6 weeks to show an effect. Perhaps you have so much pain because of the cancer cells dying - I’ve heard it said before about pain caused that way. It’s good to see you get a nice bit of uplifting news, you certainly deserve it.
Best wishes.
X
Hi ladies…things seem to be a bit qiet on here lately…i do hope everyone is ok. I had hoped for an improvement in my pain etc but still in a mess. Am really down again,can’t seem to stop crying. Apart from the pain of the ECT i seem to be having breathing difficlties,dont sem to get enough breth and then very wheezy when i exhale…scared now that my lungs and heart are affected.
Anyway… a qick catch up…i saw my dermatologist on Monday and she gave me antibiotics. She is of the opinion that if a wound smells it is infected. I saw the trials dr on Tuesday and she reassurred me that there will always be some trial or othrer they can get me on. I am now thinking that i would like to do this asap before i deteriorate and cant have them.I then went for a wound check and dressing change (did i tell yo the iodine dressing recommended by the surgeon stuck to me…took the district nurse nearly an hour to soak it off…dont need to tell you how painful that was!!). I saw a CNS who was lovely…had me crying and laughing at the same time: both him and the nurse insisted on delaying their breaks until they had treated me…fantastic.
They used a silver and charcoal dressing which has again stuck so back to the old urgotol.They did all say i should have a shower to get rid of the slough?? so that new skin could grow…which there is apparently evidence of. The surgeon didnt seem so keen this time on more treatements and advised me to go for trials as ECT is only palliative and with trils there is a chance of remission…again two opposing schools of thought. My big concern is that i cant go on trials till my skin has healed and thats not likely to happen to the ulcerated areas. I am also convinced that the cape isnt working and i know there aren’t many things left.
I do wish i could come on here with some good and positive news… i always feel like i am moaning…i just want to tell everyone eveything in case any of it can help others.
Huge cyber hugs to you all.xxxxx
Hiya. Sounds like u r going through it at the moment but I hope that all the pain u have suffered will have some positive effect.
Chin up and keep fighting
Loads of hugs xxx???
Hi Stresshead - I’m so sorry you’re in such pain and feeling so down. Stuck dressings sounds like an additional nightmare. I don’t consider that you’re moaning to us, we’re the people you can come to and feel free to share whatever feelings you have, so you mustn’t worry about it. I’d hate to think that you might bottle it all up. Even though we can’t necessarily give you practical help we can at least empathise and lend a sympathetic ear.
I think it was Marirose whose ulcerated skin mets improved - I must look back through the posts as I also think she soaked in hot baths and felt that that was a comfort and improved things. Signs of new growth under the slough sounds good. Regarding the trials, Bumpkin took part in trials even with ulcerated skin mets, so I don’t think that will rule you out. Make enquiries - I agree that now is the time to do it, rather than wait till things worsen.
Sending you a very big cyber hug ((((((((((x)))))))
Dear Stresshead I have sent you a pm
DBNO yes it was me with the ulcerated mets thankfully they have remained stable I have a CT scan 5th April to see if the cape is still working. Last week I saw a different onc who I have never heard of and when I said I was unsure about my new mets becoming more clearer she wanted to look at them and then said she would organise a scan. She said she was stopping the cape and I would have to ring the secretary to cancel the next appointment if the scan was late. Which I did today only to find a different women but she said my onc had left a note to say she still wanted to see me. I am so fed up of getting different people who don’t know me.
Anyway I hope you are doing ok (((((hugs)))))
Hi Marirose - I don’t think these medical bods appreciate that they can create additional, unneccessary stress with the lack of consistency. It’s so hard when you get conflicting information - how do we know who to believe? Why would she stop the Cape if it’s still working? There are ladies on the Forum who have been on it for years. Good luck with the scan - I hope it shows stable or improvement.
I’m due a scan on the 8th. I’m doing well but have the usual panics about every little mark that appears and any new aches and pains. Suddenly developed a purple area within the skin mets area recently and had a panic - turned out to be a bruise! I really miss Bumpkin and still find it hard that she’s gone.
Hello to the other ladies who pop in to this thread - hope you’re doing okay.
Hugs to all (((((((((x))))))))))
Thankyou DBNO
I miss Bumpkin very much I still imagin she is still here infact she will always remain in our hearts.
I know what you mean about every thing that looks different on the skin I do not think anyone who has never had these mets know how much it effects us. My new ones are becoming more noticeable but not red yet like the others.
Good luck with your coming scan I hope it goes well for you I will be thinking of you.
Have a nice Easter everyone love to all xxx
Ooh, thanks Mo for the reminder about the clocks!
Happy Easter to you all too.
X
Hello ladies, sorry havent posted for a while but another tale of woe i’m afraid, |went to hospital last saturday with severe shortage of breath…turned out to be a pleural effusion . scan showed there was no enbolism and my lngs and liver appeared clear, which is good news but oh what a trial. Becase it was easter and i wasnt considered an emergency i was left from saturday to wednesday without treatment. I was put on a ward where old people had pnemonia, copd,s&d, heart failure etc, despite me saying i had to avoid infection. I had a chest drtain on wednesday and then a follow up procedure to try and seal the plera to stop it happening again. On saturday morning i was told i could have the drain out and go home. By saturday afternoon nothing had happened so i threatened to discharge myself, drain and all. I was eventually seen to and got home in the evening. i lay on the sofa all day sunday and when i got to bed oh my,i was hot with the most horrendos diahorrea…couldnt even make the for steps to the bathroom ( sorry for the graphics). I have been in bed ever since with that, a high temp and still unable to breathe if i move plus i have a cough and pain with it…
I do feel a little better today but am so fed up with everything i dont know how much more i can take. I was spposed to be in london today re:ect…no idea if that has done any good…i still have ulcerated mets…and am now terrified that this effesion will preclude me from trialsm or i will be too ill to travel.
If any of you have any experience of pleural effusion i would be glad of your advice.
I hope yo are all having a better time of it, Much love. xxx
Hi stress head.so sorry youv been in hospital…what causes pleural effusion if your lungs are clear…you prob picked up diarrhoea bug in there…i hate hosp wards…the last time I was in I felt really depressed some lady crying all nite saying god was paying us all back for sinning.every night that went on…the ward was rundown no where to walk to they had given lounge room to staff.
I felt written off …was so glad to get home…hope your chest gets better and your tummy…im sure the other treatment will still be going ahead…take care sharonx
Hi Stresshead - what a nightmare you’ve been having. The pleural effusion sounds scary but I’m glad they’ve got it sorted, but sorry you’re still not feeling well. As Mo says, if it’s flu it does take some getting over. It’s amazing how a hospital can have so little regard for the infection risk. Even though my local hospital had the awful onc, at least when I went there with an infection they put me in a private room so I couldn’t pick up anything else. With regard to the high temperature, I read that that can be a good thing against cancer as the cells can’t cope with being too hot - some scientist in the late 1800s found that out, if I remember rightly. Let’s hope it’s been thrashing those nasty little blighters. Fingers crossed that you get your ECT appointment.
Mo - sorry to hear you’ve had the flu over Easter. Just something extra you could do without. Good to hear you’re feeling better now.
Hello to the other ladies, I hope things are as good as can be.
X
Hi Skinny friends
You may have read I have been down these last few weeks. My skin mets have increased it started when I went for my 7th cycle of cape I saw a onc that I have never seen before she bounced in said I was doing ok on cape then I pointed out I thought there was movement of the mets. She looked at them and straight away said stop cape and I’ll put you in for a CT scan. It came for 5th April yesterday I had to see the onc the following day because the main oncologist wanted to examine my past scans they phoned and gave me a late afternoon app. He said my tumour had reduced from 35mm to 26mm and everything is stable.
The invaders have spread more since I have not taken the cape and my onc wants to monitor them more closely. Lets see how long it lasts the ulcer scar on top of the tumour has now got tiny mets growing.
Sorry it’s all been about me. I have read your posts and Mo you really had a bad time I hope you feel alot better now. Our DBNO is always there with her wise words of wisdom you are a real treasure.Stresshead if you are reading this I have sent a pm.
Love to everyone and big Cyber (((((hugs)))) xxx