A further update of me being recently diagnosed with Lymphoedema.
Not got that much to say really although as the Waffle King whenever I say that, I then go on and write a mini book ha ha. No, just thought I’d give a brief update about how things have been progressing since my recent diagnosis with the condition Lymphoedema.
On the positive side of things, I’m pleased to say I’m almost 99% positive that finally the cellulitis has gone. For people who don’t know, this is a nasty burning bacterial infection you often get on your legs and is often caused by having lymphoedema. You can not even contemplate having manual lymphatic drainage/massage done on the effected areas until the infection has gone, so I feel a bit calmer now that I should be OK having the drainage done. The only slight concerning thing here is that when trying a moisturiser on my legs last week, it made my legs burn terribly. Therefore, the only thing which seems to soothe the redness and stinging is using Fuscidic Cream on prescription. I would have thought I should be able to use moisturiser like the one I have without it causing such a bad reaction, so wondering if the massaging will be the key to enabling me to do this sting free soon. I ordered a book on Amazon to inform me further about lymphodema and also ordered two types of compression socks which I shall try in the coming days. Last week I also rang up and found about three suitable places who do this highly specialised MLD, Manual Lymphatic Drainage, so this is somewhat of a relief too.
The frustrating side of things is to do with a GP of mine doing me a NHS referral to be seen at a Lymphodema Clinic. After a very kind lady off Twitter sent me the link of all the North West hospitals and clinics that have a Lymphodema service, I was thus fully expecting The Oldham Royal Hospital Lymphodema Clinic to be an option for me when my ‘Choose and Book’ form arrived. Instead, the form didn’t detail any local lymphoedema clinics, rather the only heading on the form was that of ‘General Surgery’. Now when you say General Surgery you think of hernia or gallbladder operations etc, you don’t think lymphoedema support/care……..or I don’t anyhow. I rang up the ‘Choose and Book’ thing and to my dismay I didn’t get told what lymphodema service I would be going too if any at all, I just got told that there was not any appointments available at the moment and so please try again in a bit. I decided to investigate this further and so rang up my doctors, then the Specialist Lymphoedema Nurse Helen Reddie at The Royal Oldham Hospital. She said my referral had got sent to the wrong bleeding place because it should have been addressed and sent directly to her. The BIGGEST BLOW however was when she then informed that unfortunately she is leaving very soon and at this moment in time, there has not been a replacement lined up to take her place…….ARGH! Nevertheless, trying to help she said before I let anybody touch my legs regarding the MLD(privately), I need to be referred for a Vascular Assessment and duly gave me the name of a Vascular Consultant who she recommended me seeing at The Royal Oldham Hospital. After then ringing up these private therapists who do MLD, all three of them concurred how they would feel much happier treating me if I’d had such a vascular assessment done prior to coming. I was then tasked with having to get this across to the GP who had done initial referral. I didn’t envisage any problems concerning me making this request to him, never again will assume such a simple thing regarding this GP in question.
I decided I’d try speaking to this GP on the phone and lets just say he was not very cooperative. He said as my doppler leg scan came back fine(that checks for blood clots), he didn’t see the point in me being referred to a Vascular Consultant. He added, that had this Helen Reddie known about the OK leg scan, then she probably wouldn’t have then recommended I needed to see a Vascular Consultant. I had no comeback to this because he was right, I had not told her about the leg scan. After a lot of cajoling from me, he said he would not refer me to this MR RIDINGS, but instead would write an enquiry to him about me. If Mr Ridings thought there was stuff he could then he would do a proper referral to him he said. I didn’t push it anymore after this, I’d given it my persuasive best effort and realised this was the best I was going to get out of him. The only thing that really annoyed me was when he disagreed with me that this Helen Reddie wasn’t going to be replaced very soon. I had just talked to this very lady the previous day who spoke about her regret about leaving and the fact that she was not being replaced straight away, if at all. He kept saying, “yeah that’s not right”, meaning she is going to be replaced and she is incorrect. I would have thought if anybody knew the correct state of things at the hospital then it would be her, as she works there, compared to him that doesn’t argh. Does annoy me when people argue with you when you categorically know that you are in the right or know more than them….argh.
Rang back Helen Reddie to tell her about my leg scan coming back fine and did she therefore agree I didn’t need to see the Vascular Doc anymore? She was really irritated by what my GP had said and said I still needed referring for a vascular assessment. There are other things they can do she said, for example a lymphogram. It’s a way to get me in at the hospital. She insisted she would happily chat to my GP or his secretary to help explain why in her opinion I required such a referral to a Vascular Consultant. I therefore rather nervously rang up my doctors the following day to give them this message by Helen and to pass on her phone number. I did feel a bit like piggy-in-the-middle and still do, getting it from both sides, being caught in the crossfire.
This is where I am currently up too then. I feel a bit stuck, unable to get things progressing as quickly as I would like. All this waiting for the lymphatic drainage is also is delaying the physio I need for my back, ribs and pelvic issues that I have. I don’t know if my GP spoke with this Lymphoedema Nurse Helen Reddie or not. I will give to the end of the week before I ring Helen up to see if she did indeed speak with him. I’m going to be sooooooo cross if he never had the courtesy to bother, even if he disagreed with her. This morning I rang up Choose and Book again regarding that first referral and they are going to refer me to a General Surgery clinic. Therefore, I’m thinking if this referral to a Vascular Consultant does not happen, then least I should have this as back up and it’s a way to speak to somebody at the hospital about my lymphodema. Hopefully they then can also refer me to the appropriate department in the hospital.
I’ll end by quoting more lyrics from that song by Stealers Wheel which I adapted for my headline at the start. The words so easily describe and explain the way I’ve been feeling over the last eight weeks after being confirmed with this lymphoedema condition. It’s that tune out of Resevoir Dogs for those who love that film.
I got a feeling that something ain’t right………………….And I’m wondering what it is I should do, It’s so hard to keep a smile on my face, Losing control, and I’m all over the place…………Trying to make some sense of it all, But I can see it makes no sense at all………..Cause I don’t think I can take anymore………CLOWNS TO THE LEFT OF ME, JOKERS TO THE RIGHT, HERE I AM STUCK IN THE MIDDLE WITH YOU, YES I’M STUCK IN THE MIDDLE WITH YOU, STUCK IN THE MIDDLE WITH YOU LYMPHOEDEMA, HERE I AM STUCK IN THE MIDDLE WITH FUCKING YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!