Marshax2's blog

Opticalboy

2013-01-22T18:41:59Z

Many of the longer serving members of the community will remember Opticalboy and his very graphic blog about melanoma, and the problems that he had healing after surgery.

It brings me great sorrow to have to tell you that Peter died suddenly this morning, after discovering that his melanoma has metastasised shortly before Christmas.

Peter was a genuinely lovely guy, with a wicked sense of humour that I was often the brunt of. He made many friends during his time on Macmillan and was a valued member of our melanoma community.

I will treasure my memories of him.

Marsha xx

Wide excision for melanoma

2010-04-17T12:20:28Z

Hevvur made a comment on optical boy's blog about how large his WLE was in consideration to his original mole. My own primary melanoma was tiny in comparison to his, it was 7 millimetre in diameter and only 1.4 millimetre thick, and while my photo isn't so graphic, you can see that the scar's nonetheless quite spectacular!

As for the ensuing groin dissection... well I do have my modesty, so no photo of that!

Marsha x

JanJan

2010-02-20T14:36:41Z

I'm sure many of you will remember JanJan, who initially joined the site as a carer for her dad, who was suffering from lung cancer and her father-in-law who was suffering from bladder cancer. Jan was a cancer nurse herself and gave a great deal of support to other members.

You may recall that last Autumn she was undergoing tests, that saw her, in a cruel twist of fate being diagnosed with, I think, leukaemia. The last we heard from her was before the changes to the site, when she in hospital undergoing the first stages of treatment.

Sadly, Jan lost her fight and passed away this morning at 3:00 am.

Safe journey, Janet.

Marsha x

Clemmie

2009-11-15T08:36:00Z

Many of the old What Now regular chatroomies will know Clemmie (from Amsterdam) and her penchant for nipping out for late evening goodies. Last night, Clemmie's mum, Bellfire, joined the site. Clemmie's health has deteriorated and she is currently in ICU in hospital in London suffering from a serious chest infection, she also has brain metastases and has undergone radiotherapy.

Please can you all think of or pray for Clemmie and her family at this most awful of times.

Clemmie was a frequent visitor to the chatroom and had many friends there, I was suprised then to notice that she only had two friends on her profile. I know it's not a competition to see who can obtain the greatest number of virtual friends on here, but if you connect with someone, share the same circumstances with someone or they touch your life in any way, make them a friend - it's good to know that you're not alone in fighting the battle.

Clemmie is only 30 years old. God bless Clemmie and give strength to her family.

Marsha x

Another good word....

2009-10-09T14:53:50Z

Today was results day, it's been 2 and a half weeks since I had another lump removed from my groin. I didn't realise just how stressed I had been, until I was sat in the waiting room fighting off the all too common signs that a panic attack was about to rear its ugly head, add to that an inappropriately timed hot flush and it's amazing that I actually made it to see my surgeon!

Anyhow, the lump was just an abnormal lymph node, no sign of any melanoma cells or other malignancy at all. So back to the routine 3 monthly visits with the oncologists, and only moderate levels of fear and trepidation.

Yesterday I liked the word normal, today I'm loving abnormal!!

Marsha x

A day in the life of a lump

2009-09-10T21:57:56Z

Wow! It's been a day and a half!! Had my CT scan yesterday, pelvis, groin and chest. One of my better CT experiences, the technician knew what he was doing and managed to find a vein with ease (it's taken 20 minutes in the past). Today I went for the results, but first I had to walk the dog, shower, put some washing on, catch up on the ironing, do an emergency dash to the hospital to rescue the other half's dad's car from the potential clutches of a traffic warden, pack for our holiday tomorrow and drop the dog off at the groomers. I got to the hospital early, as I always do and settled down to read an out of date copy of Saga. I hadn't given much thought to the results, but knew it was lurking in my subconscious cos I was cranky with everyone. By 3:30 I was starting to get stressed, my last appointment with Mr H lasted an hour, and I had to pick up the dog at 4:30, before leaving the house at 5:00 to meet Zoe and her hubby in North Wales. Then Maggie, his lovely nurse appeared and took me through... all good news! The scan showed nothing but an enlarged node and the needle aspiration only showed cell debris, which whilst a little inconclusive is all pointing in the right direction. I'm to call Mr H's secretary while I'm away to arrange to have the lump removed when I get back. If pathology comes back saying there are melanoma cells present in the lump, then a bit of radiotherapy might be on the cards. Had a lovely time with Zoe and Kevin, it was like meeting old friends and I was sorry when we had to come away, but we've an early start tomorrow, and still got to pack the car. Bon Vacances! Marsha x

A lump's progress....

2009-09-05T20:48:30Z

Well this week has had it's up and downs. On Wednesday I went for my long awaited appointment with the consultant oncologist to discover what thoughts he had about my enlarged lymph node. I got to the hospital early, as I always do, and was the only person in the waiting room. Sat down and read a magazine, the usual out of date ones! My heart sank when the same registrar I saw 3 weeks ago (the one that couldn't decide on a course of action without speaking to her boss) called me through to the consulting room. She proceeded to tell me that she'd had a word with Mr M. and it was his opinion that I should be referred back to the surgeon that carried out my groin dissection. Then she had a good feel of the lump, which is still, well, lumplike and then called Mr M through so that he could have a feel too! He's very lovely and explained to me that while the sonographer might think it's an enlarged lymph node, he still doesn't, but probably the best way to prove it is to refer me back to the surgeon for it to be biopsied. So that was the plan and a letter would be faxed to the surgeon. My surgeon only does limited hours for the NHS, but luckily I have private healthcare through work, so I rang for an appointment on Thursday and got one for Friday! I spent about 45 minutes with him yesterday, he gave me a thorough exam, concentrated a lot on the lump, which he agrees is a bit suspect coming up so long after surgery as it has. He did a needle aspiration and arranged for me to have a CT this coming Wednesday, and I'll go back for the results on Thursday. Things finally seem to be coming together, but I am left wondering why, when you consider the size of Merseyside Health Authority and the number of surgical sites it must have, I only seem to be able to see the one surgeon! Surely there must be more than one person that can dissect a lump!! As ever, watch this space! Marsha x

My lump and I

2009-08-12T16:19:56Z

Well me and lumpy groin are just back from oncology. You will recall that the ultrasonographer proclaimed my lump to be just an enlarged lymph node, which surprised and concerned me, since I had the lymph nodes in my groin removed in February 2008. Today I saw a member of my consultant's team and she agreed that it is a bit suspicious and requires further investigation. However, she didn't want to order up any further tests without speaking to my consultant first, and he's on holiday for the entire month of August. So I have an appointment for 2nd September and the patience of a saint! On the plus side, my lymphoedema is still under control and if anything the leg is a little slimmer than it was 6 months ago. Unfortunately, my non lymphoedema leg is getting fatter!! What's that about then....? Answers on a postcard! Marsha x

Round and round we go!

2009-08-05T11:55:16Z

Well just back from my ultrasound, following the discovery of a lump in my groin. The same side that I had the lymph node dissection last year. And it's a..........swollen lymph node!! Wasn't quite expecting to hear that! Got an appointment with the oncologist next week, so expect I'll find out more then. I suppose until then I can live in hope that it's a stray solitary lymph node trying valiantly to clear the lymphoedema in my leg and nothing more sinister! One of my shorter blogs... don't feel much like talking. Marsha x

Paranoid malignant melanomaiac!

2009-07-15T16:09:42Z

Sixteen months on from my groin dissection for melanoma, I've spent the last few weeks stressing about a lump in my groin, is it there, isn't it there? Is it a lump, isn't it a lump? I'm sure you all know the routine. Headaches have abounded, and I've lost a stone in weight since my hysterectomy in March... ok ok 7lbs of it was down to large fibroids, but the other 7lb has been involuntary and at any other time in my life would have been welcomed! Well today my 3 monthly check up with the oncologist finally came around! Usually I just smile, say everything's fine, forget any questions I might have gathered over the previous three months, allow him to poke and prod for a bit, have routine bloods for the trial I'm on and I'm on my way! Today, I managed to remember the word lump and removed my jeans for the obligatory exam without undoing them! Luckily (as luck does play an important part with melanoma) he thinks the lump is nothing suspicious, but is arranging for an ultrasound of my groin to convince me and will arrange for me to see a colleague in a months time. I had another chest x-ray, and some blood work done, mainly thyroid function tests to see if that explains the weight loss. I am feeling more reassured, well for the moment at least! Marsha

Skin cancer kills

2009-06-16T19:40:41Z

Cancer Research UK and the Merseyside and Cheshire Cancer Network have joined forces to promote a melanoma awareness campaign in our local area http://info.cancerresearchuk.org/healthyliving/sunsmart/skin-cancer-facts/skin-cancer-kills/?a=5441 Whilst it's great to see something being done, I really do feel they have missed the boat here. The campaign is targetting middle-aged men, (statistically more men will die from melanoma than women) whilst this is actually the second most common cancer to affect younger people in the 15 to 34 age group. Early diagnosis is the key to surviving this malevolent form of cancer, since in its late stages there is little or no effective treatment. Surely then a more forceful campaign regarding prevention in the young (especially all those tangoed teens and twenties I see in Liverpool) would be better than raising awareness in the middle aged? Grumble over, I'm off to stand outside our local tanning salon in my bikini.... Marsha

How do I make people understand?

2008-09-10T13:45:09Z

Went out with my two best girlfriends last night, and as it so often does, the conversation turned to cancer. One of them has recently become an expert on it since her long estranged half sister recently passed away from lung cancer and her sister in law has just been diagnosed with breast cancer and will shortly be starting chemotherapy. She's been given odds of 70%+ survival over 10 years, with an extra 6% if she has treatment. Wish my odds were so good. But when I mention that my odds are 40-50% survival over 5 years, I'm treated as though I'm exaggerating or being a drama queen. I mean how can a mole kill you? Why is it so hard for people to understand that melanoma isn't just some trivial minor cancer? Why do they not understand that the reason I don't have chemotherapy or radiotherapy or any other drug regime is because they don't have much effect on melanoma? Why do people treat me as though it's all behind me, yet I feel as though I'm still caught in the middle of it? What do I have to do to make people understand that this is some serious sh*t? Die? Maybe then they will understand that this isn't trivial and it is a big deal and no, I'm not really lucky that I don't get chemo, I know it's harsh treatment, but it least it must give you more hope than relying on a scalpel and firmly crossed fingers. Anyhow, rather than go over the same old ground with the maties, I got drunk instead and I'm paying for it now! Rant over. Marsha x

Clear out the clutter

2008-06-29T20:12:46Z

It's 3 months since my dad died and the first time I've spent any length of time at mum's house. Before you think I'm a bad daughter, I have taken up the mantle of Sunday lunch, although luckily it's usually only mum and not the siblings and their partners that turn up, and she comes over one night in the week for tea, also as oldest but not nearest offspring, I usually receive and respond to those early evening calls about the telly not working or the back door lock being knackered, I say "I", what I really mean is Chris! Anyhoo, since dad died mum has been religiously divesting the house of near enough everything that belonged to dad: clothes; books; and all those bits and bobs that men seem to accumulate over a lifetime. Today Chris thought it would be a good idea to check out the garage and I went with him. Dad built the double garage, that seldomly had room to house a car, himself and it is chock full to the gunnels of things that he bought believing that one day they would come in useful. Chris was like Aladdin, discovering the cave, I on the other hand got a little emotional, picking up wood chisels, boxes of screws and nuts, sander belts, fan belts, T cut and all manner of paraphenalia all new and unopened and never to be used by the funny little man who thought they would come in handy. I swear there was even stuff in there that I had thrown away more than 20 years ago. I try to live by the addage of William Morris - have nothing in your house that you neither know to be useful or believe to be beautiful (neither use nor ornament) and on the surface you might believe it to be true, but my loft lies testament to the fact that I am my father's daughter! Years ago, when dad was still in reasonable health, having only had one kidney removed, I told him to have a clear out, I told him we would be upset if we had to do it after he had gone. He didn't listen, but I was right! Tomorrow I'm starting on the loft! PS Anyone after some Beetle headlights or a jaguar hood ornament?

Stage 3 Melanoma and oncology

2008-06-24T10:42:17Z

Not blogged before, but felt I needed to get this off my chest, or vomit, one of the two, so I'm going for the less stressful option. Had my first real oncology appointment today, the previous two having been to discuss the clinical trial that I've been entered into, and on which I've received the "observation" arm and not the trial drug. I was early for my appointment, which was probably the first of morning outpatients, handed my letter in and was told to wait.. as you do! I then heard the nurses mutter thoses immortal word "Jackie Marshall?" (for those not in the know - that's me!)"She's not on the list". Much faffing about ensued whilst they tried to discover who I was and why I was there. Eventually a small boy masquerading as a doctor called me through. He asked me how I had been doing, "fine, I guess" I replied. I'm English! What else am I going to say? And I've never had stage 3 melanoma before, so I don't quite know how I'm supposed to be feeling, or what I'm supposed to say, perhaps some open questions from him might have been useful! Small child then proceeded to give me a cursory examination, feeling the lymph nodes in my groin.. eh up.. haven't I just had all of one side's removed, what's he expecting to find there? And the nodes in my neck... hmmm... aren't there just a few more sites in between? He also palpated the area where my liver is, but hey sonny, it's a lot deeper inside than that! And he listened to my chest before pronoucing me well and asking whether I had any questions. Yes, I did.. loads... but I left my list at home! I asked what I should do if I discovered any more suspicious moles as I have a couple I don't like the look of. He looked at them and said they were fine, I wondered how the feck he knew since my dermatologist can't identify melanoma just by looking it and he must have at least 40 years experience over the boy oncologist! Conversation was difficult, since English wasn't the doctor's first language and I only know how to count to 10 in Mandarin, so I didn't bother trying to recall the other questions I had prepared, the answers to which weren't crucial, just things I had never previously asked like how deep was my original melanoma, whether it was invasive, how many nodes had I had removed (all is all I know!), why there is no drug regime for treating melanoma, why do people in the US get interferon and we don't.. I don't care if it doesn't work just give a me straw to clutch at. He then asked when I was supposed to be seen again and I told him 6 weeks. Good job one of us was paying attention to the protocol of the clinical trial. I made my appointment and left. I started crying over coffee in the cafe waiting for Chris to pick me up and I'm still doing it now. I don't know why, I don't know if I'm sad, frustrated, annoyed, hopeless, disappointed, scared or all of those. I don't know if it's worth being on this clinical trial or whether I should bail and go back to my dermatologist, at least I have confidence in him and his team. Maybe I'll speak to the trials nurse, when I've calmed down. There, I've vented my spleen... but I still feel sick...