ME : (somewhat perplexed) “So do I need this manual lymph drainage or not now”?

VASCULAR CONSULTANT NO2 : (shouty) “YOU DO NOT HAVE LYPHOEDEMA”!

These two lines above were actually said when I had a follow-up consultation with a Vascular Consultant back in March this year.  It was a follow-up having had a lymphogram scan in the January beforehand.  Up to seeing this consultant I had been given the depressing verdict that it was thought I had a lifelong condition called  lymphoedema in my lower legs. A doctor on the Acute Medical Ward had suggested it to me months before as a probable diagnosis when seeing the state of my legs.  I then saw a junior Vascular Consultant  in the November of last year and she concurred with this diagnosis and therefore set up this lymphogram.  Subsequently, I was truly gobsmacked when Vascular Consultant number two told me in the FRANKEST POSSIBLE TERMS THAT and I repeat……..”YOU(ME) DO NOT HAVE LYMPHOEDEMA”!  

I can still remember the elation I felt that day coming out of the hospital, having just been told that I did not have lymphoedema after all.  I rang my Mum up all happy and relieved. It some took days for the news to sink in if I am honest. You see, for about five to six months I had been given the impression that I definitely did have lymphoedema. Therefore, when I got told I had not got it, I could not really believe what I was hearing at first. I must have asked this Vascular doctor to repeat this news to me about three times. I still have the letter from him that he sent to me later on. In the black and white is states how I do not have lymphodema as first thought due to my lymphogram coming back negative.  This consultant then set up for me to have a duplex leg scan in the coming weeks. I am now doing this blog because I got the results of this scan two weeks ago and sadly it did not go well. You can see in my last log how scared and anxious I was about getting these results.

The hospital appointment two weeks ago could not I have gone much worse.  Upon seeing Vascular Consultant number three(that annoyed me seeing a new consultant all of the time), I told him that I had brought an old MRI scan report of my lower back, trying to help in case he thought my bad back might explain my puffy legs.  Firstly, he rudely dismissed needing to see this scan report that I had brought. He then looked at my lower legs and in a rather exasperated manner, asked me why I was not wearing compression stockings on my legs? I suffer with chronic pelvic pain and down one leg have severe sciatica so if I wear say a tight shoe or sock, then this greatly aggravates such pain.  I had tried wearing a compression stocking just before Christmas and it had made my sciatica terrible for a few days afterwards.  As I uttered this explanation to him I could tell he did not believe me…..he was starting to really frustrate and annoy me even this early on in the proceedings.

Upon lying myself on the patient bed as requested he then dropped me a bombshell that truly astounded me.  He told me that as the duplex leg scan had come back negative, we therefore have to conclude that I HAVE LYMPHOEDEMA after all! I remember my voice shaking a bit in disbelief as I tried to muster up a reply. I looked at him and the nurse besides me as I told them how the last Consultant had told me I did NOT have lymphoedema. I stated how it had got a bit heated between us due to me being so shocked at being told I did not have lymphoedema.  He said “without being rude……..scans are just a guide….not an exact science”…in a patronizing, very unsympathetic way I thought.

For the rest of the consultation I was a bit all over the place, I think I was in a state of shock at the news to be honest.  Then this rude consultant really irritated me twice. First, he asked the nurse if the hospital had a lymphoedema service? I do not care how new he was, he should have known this himself for crying out loud….how much is he on? The nurse then ummed and ahhed and said she would refer me to the resident hospital Lymphodema Specialist Nurse. I had to stop them half way through because although I did not work for the NHS or this hospital, I seemed to be the only one who knew that such a nurse had left and no Lymphoedema Clinic was currently in operation at the moment. I had found out all this when speaking to this specialist nurse just before Christmas, just before she left. I knew more than the bloody consultant and nurse, unbelievable. I would get referred to a vascular nurse I was told, “somebody will get in touch”. I felt like telling them all to F-OFF.

With the onset of being told that I NOW DID lymphoedema after all, I could not stop thinking and panicking at not being able to wear compression socks. There are two mains ways to help manage this condition I had read some months perviously. The first is wearing compression socks/bandages and the second is having some massage done called (MLD) Manual Lymphatic Drainage. I frantically repeated to Vascular Consultant number three how I was unable to wear compression socks due to them making my sciatica and pelvic pain much worse. His rude reply was something like, ‘don’t agree/you’re wrong/I don’t think so’……I came close to swearing at him I was that angry at such an unsympathetic response.

I came out of the hospital in a right state. All I could think about was that I needed to book an appointment to see my GP very soon, where I will ask to be referred to another hospital and get another opinion about my legs.  I was dreading ringing my dear Mum up and telling her how disappointingly this hospital appointment had gone.  I felt sick in the pit of my stomach as the news started to sink in that I probably did have lymphoedema for life. How can that second vascular doctor had got it so wrong though? I now felt foolish that I had written blogs a few months prior to this about how relieved I was feeling upon being told I did not have lymphoedema. I went around telling all my family and friends the false good news for crying out loud.

I got home feeling absolutely wretched about it all, so down and depressed. At 8.15am that day I did not lymphoedem but by 9am, I had this life-long condition once again. This is where I need to extol the virtues of social media for a brief moment. I needed to distract myself from feeling so awful so went on twitter in the evening. I tweeted how disappointing the day had gone and therefore how low I was feeling about it all. The response was really heart warming. I got lots of sympathy and messages of support which really helped cheer me up. One person in particular(who I won’t name) was my true saviour that night.  They talked it through with me and was so caring and supportive. When our conversation had ended I still felt mithered about things, but this person had definitely helped lift my spirits greatly. I owe that person a lot, so want to say thank you to them from the bottom of my heart to if you/they ever get to read this blog. I knew I would have to regroup fast in the coming days but as I went to bed that night I just felt really sorry for myself…which is unlike me.  I was angry at the rude doctor who I had seen that day. Angry at this other consultant telling me I did not have lyphoedema when it looks like I do have. Angry at how shit life feels at present.

Slowly but surely I started to regroup about potentially having lymphoedema…….AGAIN. I thought to myself that I either sit here feeling sorry for myself forever or I try and do something about it, I have decided upon the latter.  If I want my health to improve and get my life back then I have to do everything in my powers to make this happen. Therefore, the day after this disappointing appointment, I was on google searching for any local therapists who do this manual lymphatic drainage thing.  Having this done and getting the built up fluid that I have in my body moving, is hopefully going to be the pivotal thing that gets me feeling and looking tonnes better.  I guess it is a safety mechanism thing but I am taking as red now that this second doctor was correct and that I do have lymphoedema……..sadly.  I hope another consultant proves him and me wrong, but I can not afford the emotional trauma of being let down like that again. I have found such a therapist nearby and can not wait to go and have it done in the next few weeks. I think I have had this cramping, poisoned, acidic feeling throughout my body for the last five years at least due to this fluid build up.

To help try and dilute some of this acidic fluid due to the lymphoedema, I am also on a quest to eat a lot more healthier.  I mean for instance eating more alkaline foods compared to acidic ones.  This should help give me more energy and hopefully aid my achy and inflamed pelvis, ribs and back  I have been doing tonnes of reading and research on the subject. My only slight issue which annoys me is that many of the green foods that they recommend to help alkaline you, are mostly green veg which is not great if you do not have a gallbladder like me. By this I mean foods like broccoli and cabbage seem harder for me to digest now thus giving me a very upset tummy. I am unable to tolerate digestive enzymes so I just hope my tolerance to such green foods improves when some of fluid in my legs goes.

The next stop is seeing my GP next week and discussing it all with her. I hope she concurs with me that I need to seek a further opinion from a different Vascular Consultant. I would prefer it at another hospital but would not mind just seeing another doctor at the same one.  Whilst I wait for that appointment I will start this manual lymphatic drainage massage and hopefully start to feel much better from it.

I have to fight to get better, nobody is going to just hand me this wonderful life with a wonderful career. I am tired of fighting though, I feel battle weary from fighting for so long. A fighter is what I am though and fighting is what I shall carry on doing.  Looking at it positively, I do not know how long this lyphoedema(if I do have it) has been making me feel so unwell. It looks like I am right on the cusp now of sorting it all out and improving from it. This could soon mark the start of my life changing for the better.

I want to leave you with a quote that the author and writer Tony Parsons sent to me once, I have the postcard it was written on still on my bedroom wall now. He wrote, “KEEP FIGHTING, NEVER STOP FIGHTING, AND I KNOW THAT ALL OF YOUR DREAMS WILL COME TRUE” .

I have never stopped fighting. The verdict from this appointment hit me well and truly for six………..I was like a boxer knocked to the floor taking an eight count. I have now got back to my feet however and am ready to roll with more of the punches coming my way.  I am not going to let the potential of having lymphoedema make me quit this fight, I AM READY AND POISED TO LAUNCH MY COMEBACK!