Vasculitis UK
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Another shock

I have been unable to post due to being very poorly since before Christmas. I had a mastectomy before Christmas and was told everything was o.k. But January this year the pain in my chest and back was getting so bad I thought the operation had upset the vasculitis and thought it would settled. My GP also thought it would settle,however to cut a long story short my GP. eventually said I will contact our nearest hospice for them to manage the pain . Well after having pneumonia and a hospital inpatient during my stay I was given blood tests Scans And MRI scan ( full body) the result came back with cancer of the spine. This came as a tremendous shock because all the focus was on the vasculitis also I had been reassured all was well with thoughts around breast cancer. Now I am having to sort out the best treatment for me I have an appointment to see a consultant who specialises in bone cancer.

I still get confused if the pain is vasculitis or cancer.

I have been in the hospice for seven weeks and they have been marvellous. I am at home with support from the hospice, I can't grumble.

I have had problems trying to reset my password why that also went off the scene as well I. Do not know but at last I am back.

I would like to send all good wishes to you all


11 Replies

So sorry to hear this. Glad to hear you are receiving help from the hospice, they do wonderful work. Hopefully the pain will settle for you. I'll be thinking of you x


I am so sorry, you are a having a really rough time. Glad to hear that you are having good support from the hospice though, their 'at home' service is marvellous. What type of vasculitis do you have and have you got somebody who is keeping an eye on that as well?

You sound very positive, good luck with it all

Best wishes



I have churg Strauss plus PAN, now for 16 years during that time having to manage the pain plus all that comes with it, like drugs etc. And the rejection of them. However I am so very lucky I have had a wonderful consultant for my vasculitis, I can approach him with anything he is so very good at listening.

I do try to keep positive I don't always succeed but I do try.

Thank you for your kind reply.


Hi, so glad that you have such good backup. Let us know how things go for you. You are in my thoughts.

Foss X


Dear Jackie,

I can't say much here except, I am praying, for you.

Sending you my love.



What a time your having , hope things start to improve soon xx


Best wishes to you I hope you have comfort around you x


Here's a quote from Dr.Seuss, that l hope will bring a smile to your face :-)

"I have heard there are troubles of more than one kind; some come from ahead and some come from behind. But I've bought a big bat, I'm all ready you see. Now my troubles are going to have troubles with me!



Thank you Sally, at the moment I would be in difficulties trying to handle the bat.

My lungs have been invaded with bronchectasis and I am on oxygen when required.

I sad to say I am feeling very low today, I have two or three of my friends going away on what sounds wonderful holidays. I am extremely pleased for them and I do love to hear of their experiences but I must say I do wish we could get away. Although we have booked a holiday for three nights later in the year, I can organise oxygen to be at the hotel for me and where we go in Mid Wales is lovely. Then I give myself a good telling off because there are so many people far worse off than me and I do realise just how lucky I am.

I think my breathing or lack of breath gets me down I have never smoked not been in an environment where the atmosphere could upset my lungs so why have I got that on top of the other things.

Oh sorry going onto feel sorry for myself again but I think I am just angry dealing with vasculitis,chest conditions, neuropathy, diabetes and now cancer.

Thank you so much for letting me moan on here.

Pleased forgive me if you are angry with me but I am going to buck myself up and get on and do something.

Thank you for being there


1 like

Jackie, don't be silly, of course l'm not angry with you, you have an awful lot on your plate at the moment. On the holiday front, my sisters and brother all go on nice trips away and l must admit l'm a tad jealous of them 'cause l would love to go on holiday but this year - and please excuse my French here - l've decided bugger it! l'm going to somewhere and will use a credit card to book it. It'll need to be in the UK because of my Vasculitis, which thankfully, was caught so early that except for now being partially-sighted plus a couple of other issues, l'm fine.

Now what l want you to do, is look after yourself first and foremost, then everyone else - that is if you feel well enough - and if you don't feel well enough, then tell them to do it themselves; if they're old enough that is :-)


Today was one of those days when I woke up felt better and decided to go to church, our church is just over the road from us.

My husband was somewhat surprised but we got ready and went. Unfortunately I took both the cancer pain and vasculitis pain with me so I went as a little druggie however it helped me to go then come back and with the help of my husband got dinner.

Feeling tired but elated I have not let any of these conditions stop me today.

I have a friend coming later this afternoon but when it's a good day I try to use it to capacity! Then I pay for it.

Are there many others that loose their senses on good days?

I was a nurse in my youth so I have always enjoyed looking after others and when I had to give up work due to vasculitis and that made me very sad.

Have there been many people who have found themselves in similar situations.



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