12 April 2010
It all started when I went out with my Friends for "pie and a pint" in Leeds one afternoon. Very enjoyed my pie and pint, but remember feeling it would not go down. Felt like my oesophagus was just jammed somehow, frinds were amused when I complained that said pie was "stuck in my oesophagus, pretty soon after I vomitted outside the RC Cathedral of St Anne's, what a disgrace I was for a good Catholic Girl( knew something was up and had only had one beer....
Had a few similar episodes of backlog in my oesophagus and trotted to the GP where I recounted my tale of what felt to be an oesophagael stricture, (am a trained Nurse so had some knowledge of my inners and stuff.)
19 April 2010
Was promptly sent to the endoscopy Unit, where they were somewhat concerned but the decision was no action as yet. Dietary advice given along with Lansoprazole and Ranitadine. Had around 10 months of watching brief before any real action, things seemed to be ok- ish.
Things were relatively ok for some time apart from strange sensations and feeling off my food. Went to see Gastro Team again and was diagnosed with Oesophagael damage, kind of along the lines of Barrett's Oesophagus, but only fairly moderate. Remember hearing that due to the very long term, on and off use of steroids following severe Pneumonia's and brittle Asthma, damge had occured. Recall seeing pictures and lesions where there looked like almost burns to the lower Oesophagael lining.....
My choice was to keep things quiet and try and muddle on alone, until I started treatment, if there was indeed to be any.... Was SO in denial and had MALT Lymphoma written down, did not even look at literature. was truley "away with the fairies"
Parents knew something was up and had wondered if I was drinking to excess due to upset tummy and a few GI bleeds... All came out on 23 July, they were upset but the anger started. They were very off about me not telling them. I have lived alone since I was 18 and am fiercely independant and hate asking for help.....
My diagnosis is MALT Lymphoma and there is not a great deal of information around, this site does have some useful pages though, am struggling to find a Group to help and am only just opening up to talk and discuss.
08 Aug 2011
Started 6 weeks of Radiotherapy, which I tolerated well and coped with.
10 Oct 2011
Started CHOP Therapy for MALT Lymphoma, only without the P, for Prednisalone. This is the GYT that probably caused much of the problem.
11 Nov 2011 (Funeral in Newcastle)
Attended the Funeral of a dear School friend, who lost her fight against breast cancer. Was determined to travel and attend the Mass up North, was fabulous to see old Friends. The Funeral and loss of Lisa, had a massive effect on me and this is when I think my "wheels fell off" Looking back, am sure this is when I slid into feeling Depressed.
05 Dec 2011
Today is my last Chemo this year anyway. I have now had 18 rounds= 2 cycles.
Am looking forward to a break in Hospital treatment and going to try and think positively Hope to manage to become stronger emotionally and try and heal Family rift.
I am devastated by my families reaction and feel massively let down, thay are really unsupportive and are feeling sorry for themseves having turned it into their illness. Parents are angry and resentful and all but ignored me when I went to stay with them 2 weeks ago( Feel totally shattered and all alone. They keep taking phone calls and talking to others about my illness, WTF this is very personal and feel completely let down and invaded. PEOPLE SHOULD BE CONTACTING ME SURELY... had bit if a row about this. I have lost control of my body and want to have control over passing of information.
Dad is in total denial and Mam looks at me with a horrible kind of hatred radiating from here face, can't even bear to be in same room. Need to talk but they ae not receptive HELP( I have an Aunty and Uncle who are very kind, but Parents massively upset and seem jealous that I have entrusted said Relatives...
Really struggling to cope due to the lack of support I have. Initially felt things would be ok, as lots of people were "full of support" making all sorts of promises, in reality VERY few seem to want to know and help. Just can't get over how although everyone knows I am living alone, however they are too busy and self centred to reach out. Don't feel I am asking for much, just the odd visit or coffee meet..... That said I do have a few Friends who have been very good.
Although I am physically better than I had anticipated, I am starting to feel very down and cry at the drop of a hat.... often I cry for hours and although it is cathartic, it drains my quite low energy resources.
I feel so guilty for being such a wimp and baby, after all my suffering in NOTHING compared to many of you on here. Always felt I coped well with life until now....
Hoping to gain some support from the site and will help anyone I can too) Shame it seems the specific groups are not that apt to my situation, maybe beacause this is a less common Cancer?
