Christmas is coming the goose is getting fat, please put a penny in the blind mans hat.

Hope this rings a bell with many of you when children. I hope those on you on treatment will have a pleasant Christmas. So I will fill you in on my life right now. In June had the Stereotactic treatment pelvis area and the pain did not subside. I was given Targin etc but felt that this wasn't the solution, So two weeks ago, I more or less said nicely, I still have a problem, and it has to be sorted, My left thigh is sore and achey between my groin and front of my thigh. The only time I had relief was when on antibiotics for Sinus but it doesn't seem like cellulitis as it is not red. I had my Mri last Friday, yes there is swelling there or oedema, So now being referred to Occupational Therapist for treatment, I was also advised buy a pair of compression tights, However today the MDT say its not connected to the Cancer recurrence of this year, The swelling has fluid which I did notice during the mri as in coming to the surface but Onc says its not Cancer. The mri was discussed at MDT today and they felt it was better to have a petscan to see if this is another lesion on my muscles as its a different muscle. Despite my protests that it should have been seen in last scan as I have the same pain, they say its not, I am a bit perplexed really to be honest and disillusioned. I did go and get fitted for the correct compression tights today and will try to get appointment with an OT privately as painwise have had enough. Now I am told the swelling is hitting a nerve hence the pain and I need to control swelling, I have been wearing spanx which helps, so I don't need the heavy stuff for pain, The OT in the chemist says I need anti inflammatory meds, The gynae nurse says switch to Panadol four time a day and they will change to something for nerve pain instead of the Targin, I can still see myself on a scooter eventually, this is my black humour coming out. If any of you had a similar experience I would appreciate some feed back. I did attend the AGM of the IsgoPPi group in Belfast a month ago, I found it extremely interesting and the patient story this time was from a beautiful young Lady Laura, who told her story on cervical Cancer, She is being treated for this at the minute, She was refused the vaccine because of her age but if she had got the vaccine she wouldn't be in this position now, However, it was lovely to see she was given an Honory Doctorate in UCD yesterday for her Advocacy for the vaccine and her passion at the moment is to educate us all that it is a necessary jab to prevent Cervical Cancer. Imagine while she is on treatment she is doing all this, The rest of the meeting was interesting and I hope some of you will make it to the next meeting in the New Year,

[coksd]

Aw thanks as I am one on treatment I had my last one yesterday before christmas and half way there so should be fine by next weekend just in time for the festivities. That is good news for you that it is not recurrence and hopefully you will get some pain relief that will be effective. i bought an electric silent night heat pad in argos and its good for pain while sitting down just have to be careful not to fall asleep. I take anti-inflamatories vimovo 500/20 they have a stomach liner in them and they are very effective I don't take them regularly but did in the past as I had been misdiagnosed for over a year with shoulder pain and swelling that extended to ribs right before my plural effusion. I seen that young lady Laura on instagram getting her PHD she has been on the late late show and Claire Byrne live she used to work on a beauty counter in Limerick up to recently and always in such good form and always so helpful. Its so sad for her as she missed the vaccine it wasn't out on time when she was in school and she was too young for screening I hope now that the immunotherapy pembrolizumab has been extended to ladies outside the 221 group that it may work out well for her maybe that is what she is on. She is an inspiration.you are great to get to all the meetings hopefully I might meet some of ye next year at the patient mornings the last time I was sick when it was on in Limerick. Hope you have a lovely Christmas too. xxx Clare

[Hidden in reply to coksd]

Laura was at the meeting in Belfast the Isgoppi meeting that is. She spoke to us patients and then to the Consultants, she was terrific. A beautiful girl yes she is on Pembro paying for it as far as I know. She was too young for the vaccine. I missed seeing her on tv. Enjoy your Christmas and hopefully you might get to the next coffee morning

[IrishMollyO]

Hi Joan

First of all when I ticked like it turned it into unlike ! You have a lot going on at the moment especially the pain and swelling. Has anyone suggested it could be lymphoedema ? I am curious as I am aware that radiation can cause it. Before I had radiation treatment after my mastectomy I was advised it could cause it. It's interesting that they are advising you to wear compression garments which is the exact remedy for lymphoedema following breast cancer. Luckily I didn't get it as my surgeon didn't have to remove my underarm lymph nodes after a special scan was done on morning of the op. I have read of other women on this site getting it after procedures for OC. Maybe you have already asked that question Joan. If you haven't it's worth a try. It's not pleasant but it is manageable and better than the thought of a recurrence. Let us know how it goes. I won't bore you with my goings on as I intend to put up one of my rare posts about my latest news. Have a lovely Christmas in case we don't connect in the meantime. Take care.

X X X

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[Hidden in reply to IrishMollyO]

Hi Mary probably feeling sorry for myself. But the pain of Lymphodema is horrific. No one listened to me properly but then again if I hadn't the pet scan and the radiotherapy I could be in a worse position. I have the compression tights on order in the meantime wearing spanx from Debenhams as advised. So now would like to know what is the correct meds for this. No doubt I will see the OT and may have to go privately for a faster appointment. I had already radiation in 2011 as well as summer and perhaps had it all along but it has got worse. The pain is the same as before this summer treatment so I cant see the point in another petscan on reflection. But I suppose its better to be sure. I have checked in with Lymphodema sites and its not pretty. My cousin in UK has it after Breast radiation and she cant use one hand so maybe we share the same nerve problems. Have a lovely Christmas and I look forward to reading your post soon Joan

[harpist_UK in reply to Hidden]

Hi Suzuki - I am currently on Gabapentin for stabbing pain caused by lymphoedema in my arm/breast compressing nerves. Maybe one to ask your doctor about? It can be controlled with this, exercises and compression garments. Not a bundle of laughs to be sure, but if there is such a thing as a lymphoedema clinic near you they can advise.

[Hidden in reply to harpist_UK]

They think mine is compressing nerves too, I have already contacted a MLD Specialist and she will see me in January. Waiting with abated breath for my sexy xmas tights haha. I already had tendonitis in that hip so I am totally cynical as to if I ever had that.

[harpist_UK in reply to Hidden]

Wishing you all the best with that, Suzuki. There's no end to the ways ovarian cancer keeps on giving. I am going back on chemo in Jan and they tell me that will help the problem - it did last time. In the meantime the Gabapentin is doing a reasonable job at controlling pain, at least during the day. The devils seem to come out at night!

[IrishMollyO in reply to Hidden]

Hi Joan

I really hope I haven't upset you with my speculation about lymphoedema. It just occurred to me because due to my B C and Radiation I was watching out for it for myself . There may well be a more innocent explanation for your swelling and please God it will come soon. Have your team suggested what it might be ? If it was it there are other remedies for it apart from compression garments such as special massages done by lymphoedema nurses. Once again sorry for upsetting you with my speculation . I'm no doctor as you know but just someone who has had to study and read up on medical conditions and treatments I never wanted to know about in the first place! Just like everyone on this site. I hope you get answers before Christmas. Will stay in touch. Please let us know how you get on. Take care.

X X

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[Hidden in reply to IrishMollyO]

Mary you said nothing out of the way I kind of sussed it myself months ago but my gp said he couldn't see swelling so he better go to Specsavers. They fired morphine at me to shut me up but deep down I knew in my gut, this wasn't the answer. I had to put my foot down in Clinic two weeks ago and say, I have a problem, then they listened and acted, I am wearing sexy spanx right now until I get the compression tights, I believe dry brushing helps but will wait to see what therapist says. In the meantime, I could go and sell my meds just my dark sense of humour.

[IrishMollyO in reply to Hidden]

I'm glad to hear that Joan because I was thinking me and my big mouth! The thing about them naming it properly is that then you can agree on a therapy for it . Were you at the conference in St James organised by Sharon where one of the topics was lymphoedema ? There was an excellent patient speaker singing the praises of St James state of the art therapy for lymphoedema. You could ask her advice. I will be seeking her advice on my own stuff this week. In the meantime Joan I hope you can find something to deal with the pain and discomfort while you get the answers you need. Take care and good night

X X 💕

[Purplish]

Hi Suzuki

May I ask what stage were you when first diagnosed??

Merry X mas

Joelle

[Hidden in reply to Purplish]

Hi there, I really don't know wasn't told although my surgeon said it looked bad before I was in theatre. But that was 2006 so cant really complain. I am still waiting for my tights, bad time of year I suppose but have the spanx. I have mild lymphodema I went to a private MLD therapist. She feels as well that my hip is out of sync because of the lesion I had in the summer. So it was suggested I have a physio assessment. So got cancellation and yes I have impingement. So having a few more treatments to see if it make any difference. I will certainly chase up my gp for nerve pain meds. At the moment its back to Panadol and voltarol gel which helps more than the oxycodone. I hope I get answers but I feel at least I have tried other avenues. Its nice to be told over the phone to change to nerve pain meds but it was up to me to go to my gp and this week wasn't the week to do it. However I will contact them after Xmas holidays. Hope your Christmas is a good one.