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Forum Post: Re: Big Dreams

987654321 — Tue, 21 May 2013 18:15:00 GMT

Hi Alan Just got back from the doctor and being told I've got a severe case of tonsillitis. Just what I need and know one to make me a drink. Feeling a bit sorry for myself, lets hope the antibiotics start working soon. Sally

Forum Post: Re: New to the Group

Gilly67 — Tue, 21 May 2013 18:14:00 GMT

I too have been recently diagnosed and had right mx with node clearance last Wednesday. Back for path results on 6th June. I had a grade 3, 4cm tumour with possible multi focal and 3 lymph nodes looked to be affected from the scans.

I try not to think about results as yet, although I will always prepare myself for the worst news, ie that is has spread.

Still find it hard that I feel and felt so well and fit yet i have cancer.

Since surgery i have lots of nerve disturbance and discomfort under my arm and down my arm, but I guess its normal. Havent been in any pain and the exercises are definitely helping, i have good mobility in my arm and shoulder.

I am based on the south coast near Eastbourne if there is anyone else in the area going through the same things.

Gill

Forum Post: Re: Can a TME operation be done by key-hole surgery?

jenny53 — Tue, 21 May 2013 17:59:00 GMT

I was amazed when my surgeon said that he does most of these operations laparascopically. In the end I ended up with a 'bit of both' as there was possible involvement of my uterus (not a complictation you will have!) but it can definately be done in some circumstances.

Jenny

Forum Post: Re: dreamed of my husband........

Tim E — Tue, 21 May 2013 17:53:00 GMT

What I need to know first is, what wine are you drinking? Anything from the Veneto gets my vote!

Second, no it isn't silly. It's perfectly natural and normal. The frequency and intensity varies from person to person.

The evening of Laing's cremation I felt his presence with me in bed. He appeared in a momentary flash when I was at breakfast on holiday in Zürich. in the very early days I've felt my hand close as though there were something forcing it closed, holding me.

Now, whether or not any of this is actual or I was simply hallucinating or self deceiving I don't know, furthermore I don't care. What I do know is they happened to me and I interpreted it to mean what I took to be his presence was there protecting me.

As I say, I don't care what it is. I just hope he comes back a few more times. I would like to see his smile at least once more like I did in Zürich.

If you believe in a soul or a spirit then it may provide comfort. I don't, but I know it made me feel better and I am happy to go with the flow here.

Tim

Forum Post: Re: pain in node removal arm

mistymoley — Tue, 21 May 2013 17:33:00 GMT

Caryn

Yes! It's really annoying! I have had the same - there's nothing you can do though, it is the nerves repairing themselves, but you can't feel it so you can't scratch it! You might get a little feeling but it will never be fully repaired - I asked my GP about it and he said that the area of nerves are not where they knit back fully.

Minor, but still annoying!!!!

Forum Post: Re: Haunted by last few moments...

allyRHB — Tue, 21 May 2013 17:28:00 GMT

Hi Jemima. I'm so sorry you are in so much pain, I know how you feel I lost my most beloved step father from stomach cancer 11 years ago, now my husband has been diagnosed with terminal cancer. I know what helped me with my step dad was, just think what he would have said if he was still here, and it got me through, now think wht your lovely mum would want for you? You know the answer, she would want you to have peace of mind. I know it's so bloody hard, and I know I'm gonna have to envisage the same thing whenever God see fits. Hope you find peace of mind. Take care x

Forum Post: Re: Husband on Sofa

allyRHB — Tue, 21 May 2013 17:21:00 GMT

Thanks Tina, it's all so blooming hard isn't it? Hope you are ok? X

Forum Post: Re: Banal Cancer

Tonywit — Tue, 21 May 2013 17:09:00 GMT

Hi Robbie. Simply, all that I dreaded when I was diagnosed, you have suffered. I curse this cancer that reduces us to humorous names (bumlanders etc) and a lack of wider discussion. I am married with kids, 58 and no obvious causes. Fortunately it seems not to have spread but mentally I always add a yet. And that brings me two pangs when you and others announce more serious developments. One of guilt that I seem to get off lightly and the other being one of fear as I mentally note another case of serious development. Yes why not and why anything? I take solace in thinking that my generation was born to be marketed to. Mad Men sold us cars with exciting adders to names like Escort Ghia. Some coach builders name but used to suggest elite. WTF? And it spread right through to my rectum. I was sold the dream of perpetual fitness, total cradle to grave care. I swallowed it and went back for more. Then the not so big c appears and annihilates my dreams and threatens me with early death . Worse it gives death a foot in my door and suddenly my pride in being a fit 58 year's old guy becomes a daily debate on what is this all about. Well it's not about a new improved soap powder. I guess my way is not the time served money raising antic route but a more philosophical thought based coping route. Instead of buying the dreams they want me to have I'm reflective of what I can offer anyone. Take care Robbie. Moved by your status. Get well - best dream I'd aim your way. But then I'm no Mad Man??

Forum Post: Re: what to do

little rose — Tue, 21 May 2013 16:26:00 GMT

Hello weealibongo32,

Sounds like you are having a tough time. This cancer stuff is a shock and the treatment can take some getting used to. You have made a huge positive step by coming here. You will get lots of support and good advice.

Without knowing your Mum or the type of cancer the biggest thing you can probably do is be there for her. She has obviously seen the doc and got into treatment. Chemo can make people feel pretty lousy and tired so expect some grouchy days. Try to be patient with her.

If you know what cancer she has you can ask questions about what to expect here.

A new day can give a new outlook on life so please try to be positive for yourself and her.

Sending you our thoughts and some hugs

Little Rose

Forum Post: Re: update biopsie

MiniG — Tue, 21 May 2013 16:18:00 GMT

I've no experience of liver biopsies (they seemed to know my lesions were "nasties" just from the CT scan) but just wanted to wish you luck with it. I'm sure you will be fine, and if it confirms that there is nothing malignant going on, it will be worth any unpleasantness involved in the procedure.

G xx

Forum Post: Erlotinib (Tarceva) - will dad be given steroids?

sarahmay — Tue, 21 May 2013 15:16:00 GMT

Hi all,

Dad is due to start erlotinib in the next couple of weeks having finished his
4 lots of IV chemo for lung & secondary liver cancer.

He coped with the chemo really well...just a bit of tiredness but nothing
major at all really...he was still up & about doing everything! This final
lot hit him worse tho and he's been a lot more tired & still is almost a
month after finishing the chemo. The nurse says this is normal as it is a build
up of the chemo....

I just wondered if anyone knows if dad will be given steroids on top of the
erlotinib tablets? They seemed to really pick him up through the chemo...gave
him energy & increased his appetite a lot. I just fear he's going to get
more & more tired & there won't be anything to pick him up :(

Thank you in advance xxx

Forum Post: Re: I think we're coming to the end now

Londyn — Tue, 21 May 2013 14:39:00 GMT

I was so sorry to read about your mum. My heart goes out to you and your family. Meso is such a cruel disease and it's all happened so quickly. The love between you and your mum is very special, something you will treasure for ever and must give your mum great comfort. It's understandable that your Dad and brother don't want to let her go but I also understand what you are saying. A huge hug to you all. XXX

Forum Post: Re: SURGERY OPTIONS HERE ON IN EU FOR FAILED RT FOR HYPOPHARYNGEAL CANCER

allyRHB — Tue, 21 May 2013 14:23:00 GMT

Hi CB Well my husband had stage 4 cancer under his tongue and tonsils and it has now gone, so yes in my opinion they are very good.

Forum Post: Re: So that's why I feel like this........

LoopyLoo — Tue, 21 May 2013 14:18:00 GMT

Jen

I absolutely relate to your post - I have also been going through a "this time last year" phase. This time last year Paul had started his 3rd lot of treatment and was being very positive, this time last year we were making plans etc etc. The date I am dreading is 18 June - that's when we saw the oncologist who said that he was stopping the treatment as it was doing more harm than good. A couple of days before that Paul started to get very ill and it was from then that he was unable to lie down, so he spent the last few weeks of his life sleeping on his knees. It was all pretty crap.

Paul's last weeks were awful for all of us, he couldn't sit or lie down, his tumour broke through his groin and the tumour in his bum got much worse. He really didn't want to die so spent a lot of time organising things and planning things. I spent a lot of time at the doctors, at the chemist, cleaning him up, washing etc etc. But we had some nice times together as well, and said lots of things that perhaps we never would have said to each other.

But, as you say, we did get through it all and we still do. I spent a lot of time in the garden this weekend and got it looking quite nice - I think Paul would be pleased. Although I've clearly jinxed the weather and probably won't get to enjoy it much now! We keep moving onwards, that's what Paul would want me to do.

I like the idea of us being warrior friends! Carpe diem indeed!

Forum Post: Re: I got through yesterday

Tim E — Tue, 21 May 2013 12:47:00 GMT

Hi Angie,

Having a mad time at work so apologies if this comes out all wrong with spolling mistajes!

You're sounding so strong and positive. I was very scared deep inside after the funeral. After all, everybody else has said their goodbyes. We, as the survivors have to pick up the pieces. Sometimes it feels like hoovering round the (real) tree at Xmas. The darling little needles are still there when you put up next year's tree!

You don't only want him to be proud of you, you want to be proud of yourself. Carrying on the best you can is hard, but I am finding my return to "normal" with the return of Only Connect on BBC4, which we watched, Laing frustrated by the fiendish questions and annoyed (his word, not mine) that I could do so mnay of the missing vowels. Last night, one round was a doddle, Audrey Hepburn movies! Who couldn't get in a flash that BRKFSTTTFFNYS was BREAKAST AT TIFFANYS? Easy!

I'm having a mini struggle what to do this weekend. I've told a colleague what I could do ( I am trying to get hold of an old friend but she's not replied. Maybe she's on holiday already. Damn it). She told me to go and do it, even on my own.

If my friend doesn't answer is anybody game for a surpise weekend? The weather forecast says warm if possibly a little damp, but what do you exect in May? Temptation! I have to convince myself to spend money like water just for this one last weekend!

Tim

Forum Post: Re: Moving on after Melanoma

Marsha — Tue, 21 May 2013 12:14:00 GMT

Hi Adam

I try not to look at or analyse the stats too much, that was what really messed with my head when I moved to stage 3. 50% sounded like good odds, until I realised in meant one in two... maths never was my strong suit, but don't let my boss know!

You have a greater chance of recurrence in the earlier years, I remember my oncologist congratulating me once I'd got two years under my belt, but it's cold comfort when you've already had a recurrence in the first place!

I didn't have a SLNB, but back in 1996, I don't think they were around. I didn't get one when I had my recurrence either, not entirely sure why, but I supposed it save me one unnecessary procedure.

If you're on facebook, come and join our group, Melanomamates UK, you'll get the benefit of 100s of personal experiences, rather than just mine.

Marsha x

Forum Post: Re: What i need to do in Breast Cancer

KateG — Tue, 21 May 2013 11:52:00 GMT

This site offers the best information so go to the top of this page and click on CANCER INFORMATION, then go through the list of cancers until you click on BREAST CANCER where you will find what you need. Keep to this site or the www.breastcancercare.org site who offer equally good help and advice.

Best wishes

KateG

Forum Post: Re: Does anyone have advice?

allme — Tue, 21 May 2013 11:42:00 GMT

Hi Purdy, I can really empathise with your post, and I think Ethel's practical advice is good.

I also havent told many people either, as for the times I had to, the look on their faces was more than I could cope with, and I had to keep telling myself its because they care for me and that has made it a bit easier, it has got to the stage i can't keep it a secret as I have had so many appointments already and two surgeries and a third planned, and treatment after that unknown.

Keeping control of your life is important i have had lovely well meaning friends wanting to come in and do everything, but I want to do as much as i can for me and my daughter and that has been hard to explain to them, especially as everyone offers to take her out to give me 'a break' so I have to explain I do not need a break from my child (every well moment with her is priceless) but if they want to do the ironing for a hour that would be great!.

I love the idea of a lego fund Ethel as after my first op the flowers and plants at home where beautiful but became difficult to look after. My daughter is just 6 so I will think of something similiar, it will certainly help me knowing she has a treat to look forward to.

the advice I have been given by a friend who is recovering from cancer, is to be selfish...think what is good for you and your immediate family and stick to it.

There are goverment guidelines on how soon you should be seen. Give your breast care nurse a call and maybe she can help you.

good luck :) x

Forum Post: Re: Newly diagnosed

jan56 — Tue, 21 May 2013 11:36:00 GMT

Hi Nicola57, I choose not to have recon because I am have a triple neg cancer with a chance it could come back in the other breast. I decided that I will wait for several years to see if it comes back and hopefully if it doesn't than I will think about recon. At the moment it doesn't worry me however I am 57yrs and I should imagine for a younger and perhaps a women with a bigger bust than me it would be difficult.

Forum Post: Re: Axitinib- Side effects and support please...

soreze — Tue, 21 May 2013 10:51:00 GMT

Charlotte, sorry to hear that your partner is suffering these side effects from his new treatment. It is good that you are able to give him so much support and I am sure that, male pride notwithstanding !, he really appreciates it. However, it sounds as though input from others would make things much easier for you both, starting with some advice from the medics on relieving the side effects. Does he have a cancer nurse specialist (CNS) ? They are generally very good at giving advice about side effects and are usually more accessible than the Docs. It may well be that the side effects lessen over time but, in the meantime, you might be able to get suggestions as to how to deal with them. My husband has been on Axitinib since Jan 2013 and his onc told him to take Paracetamol for the joint pains as the usual remedy (NSAIDs like Ibuprofen) isn't indicated. It could also help with the headaches and perhaps the hot and cold sweats - don't know about the stomach pain as my husband has diarrhoea rather than that - but the best thing is to talk to someone on his medical team. Perhaps the GP could also advise ? He/she probably won't know much about Axitinib but would certainly be able to implement any suggestions from the oncologists. As to the length of the course, these drugs are usually given for as long as they are working and the patient is tolerating them, so they are not like chemo where the patient only gets a certain number of cycles. Hope this is useful. If I can be of any further help, don't hesitate to ask. S