My usual Consultant was on holiday so I saw another member of the Team that he works with closely. This made me more anxious than I already was as I had become reliant on the continuity of a Specialist who I had become to trust, literally with my life.
My husband and I where called through. The usual greetings and pleasantries over with I was asked to lie on the consulting table for my usual physical examination. Everywhere was looking OK, but my groin; that was a different matter. The Consultant looked at me and confirmed the growth. We sat down.
My bloods where on the whole stable but my LDH has risen to 712; this was in line with the growth of the lymph node.
An urgent CT scan was arranged with a follow up appointment 1 week later.
2 days later I received a letter confirming an urgent appointment for a CT scan that Friday. For those that have never experienced a CT scan the type I had involved an iodine contrast. After booking in, a member of the X-Ray team explained that I needed to drink an 800ml fluid which contains iodine, over a 45 minute period. You are given a choice of blackcurrant, orange and lemon. None of them are particularly appealing so I reluctantly requested blackcurrant to which the lady sat opposite me then gave her feedback on this delicious drink by advising "the lemon is the best". Too late, but as this is the only flavour I have yet to try, I shall try to remember her advice for my next scan.
Having drank the fluid in 45 minutes as requested I was called in to change into a gown before being taken to a waiting area where I sat with a Radiographer to undertake all the paperwork. After I gave my consent to proceed a cannula was then inserted into my vein and flushed through with saline to ensure it was working. I was given a further moment to compose myself before being taken through to the scanner, and settled on the scanner table as best as I could be.
Once the scanner was set and my cannula was hooked up to the scanner the staff advised they would undertake a further saline flush and no sooner had they finished speaking I felt incredible pain in my arm. My vein had blown. From what I can understand a vein can blow due to too much usage and too big a cannula being fitted. This was no-one's fault and I suspect my vein was throwing a tantrum due to all the piercings it was getting through the various tests. Another Radiographer came through to explain when the vein blows the saline has no-where to go and therefore leaks under the skin, which causes the pain. She then proceeded to massage my arm to help release the saline from my skin and to reduce any probable bruising as a result, whilst the other Radiographer inserted a smaller cannula into my opposite arm which flushed successfully and we where ready to start the scan.
Again if you have never experienced a CT scan with iodine contrast, the iodine is flushed through intravenously as you move in to the scanner. It's a strange sensation where you are warned of as they begin, which I can only describe as a very warm sensation through the arm and body, which also makes you feel like you have pee'd yourself. Of course you haven't, it's just the sensation.
A few deep breaths, hold your breath, and reversed back through the scanner and the scan was complete.
About Me
- About Me
- My name is Samantha, Sammy to many of my family, Sam to my friends. My blog describes the journey I have undertaken so far and the journey I continue to make having been diagnosed with Follicular Non-Hodgkin Lymphoma Stage 4 in December 2009. With the exception of surgery at point of diagnosis I have been actively monitored under a "watch and wait" approach and achieved 5 years without treatment and monitoring only last December. My prognosis is approximately 10 years but for every year we watched and waited I have felt positive that this would be extending that prognosis. I am very happily married to Roy and celebrated our 10th wedding anniversary last October and we have a beautiful 9-year old son Callum. My Step-Daughter, 20-year old Hayley who lived with us is now at University. Our house is awash with my beloved pets, our 2 Cavalier King Charles Spaniels, "Amber" and "Saffy", "Caboodle" the cat and "Elliott" the Rex rabbit. The opinions on this blog are my own and based on my personal experience.
Sunday, 8 March 2015
Saturday, 7 March 2015
Lenny Awakes
Lenny (my attempt at befriending the enemy by giving 'it' an identity) my Lymphoma appeared to progress towards the end of January. The signs where not B systems (night sweats, fever, 10% loss of body weight over 6 months etc) as you would expect and are advised to keep watch for, no, it was the enlarged lymph node in my groin which seemed to be growing. This was almost a replay of 2009 when my Lymphoma was first discovered.
Over the course of February I monitored the area myself but when it started to become uncomfortable (the sensation I can only describe as the aftermath of getting cramp) and shooting pains down my leg I knew that Lenny really was on the move.
My 3-monthly review was scheduled for the last week in February, just 1 week away, but I decided to make the call and after discussing the situation with a very helpful Clinical Nurse Specialist, who then referred it to one of the Consultants, it was agreed that I would go in early. Between then and that appointment I had my usual blood tests performed.
A whirlwind then ensued.
Over the course of February I monitored the area myself but when it started to become uncomfortable (the sensation I can only describe as the aftermath of getting cramp) and shooting pains down my leg I knew that Lenny really was on the move.
My 3-monthly review was scheduled for the last week in February, just 1 week away, but I decided to make the call and after discussing the situation with a very helpful Clinical Nurse Specialist, who then referred it to one of the Consultants, it was agreed that I would go in early. Between then and that appointment I had my usual blood tests performed.
A whirlwind then ensued.
Has It Really Been 3 Years Since My Last Post?!
I just cannot believe that time has flown by so quickly but you could have assumed that was a good sign as it could mean that my Lymphoma has been stable, and you would be correct in thinking this. As of last December (2009) I achieved 5 years on watch and wait!
An interim scan showed that all was stable yet I continued to be monitored 3-monthly and all has been well.
I shall not lie, at times I have found it hard going, as I have been plagued with various viruses that seem to attack my immunity before the current one has left the scene. Psychologically the concept of watch and wait continued to leave me anxious but as time went on this did get much easier, so if you are on watch and wait, I can offer some assurance that over time this will become easier. A positive outlook really does work wonders but ensure you draw on your support network as and when you need to; you are not expected to be a hero, just focus on being you.
An interim scan showed that all was stable yet I continued to be monitored 3-monthly and all has been well.
I shall not lie, at times I have found it hard going, as I have been plagued with various viruses that seem to attack my immunity before the current one has left the scene. Psychologically the concept of watch and wait continued to leave me anxious but as time went on this did get much easier, so if you are on watch and wait, I can offer some assurance that over time this will become easier. A positive outlook really does work wonders but ensure you draw on your support network as and when you need to; you are not expected to be a hero, just focus on being you.
Friday, 6 April 2012
Come Visit Me on 21 April!!!
I've finally got everything arranged and agreed for a Lymphoma Awareness Day on Saturday 21 April at the Basingstoke Discovery Centre (library).
You will find me in the centre of the library with awareness literature and collection boxes, hoping to increase peoples awareness of the 5th most common cancer.
Please do come along and say hello. Would be nice to see some smiling faces supporting the cause!
You will find me in the centre of the library with awareness literature and collection boxes, hoping to increase peoples awareness of the 5th most common cancer.
Please do come along and say hello. Would be nice to see some smiling faces supporting the cause!
Patient & Carer Conference
I attended the Lymphoma Association & Leukaemia Care Patient & Carer Conference last weekend at the Marriott in Swansea. I felt priviledged to hear from the patient speakers who spoke about their first hand experience of Lymphoma and Leukaemia. It was endearing and very touching; brave people indeed.
I met some lovely people and I hope those touched by cancer continue to fight their disease for years to come.
The presentations from the medical professionals were excellent and I was encouraged to hear of some new treatments for Non-Hodgkin Lymphoma first line treatment that are coming down the line and hopefully available from 2013.
I look forward to the next one.
I met some lovely people and I hope those touched by cancer continue to fight their disease for years to come.
The presentations from the medical professionals were excellent and I was encouraged to hear of some new treatments for Non-Hodgkin Lymphoma first line treatment that are coming down the line and hopefully available from 2013.
I look forward to the next one.
Wednesday, 29 February 2012
Another Reprieve!
I had my 4-month check up today and all was well. The Lymphoma appears to remain stable, no obvious progress or spread and my bloods are looking very good, so I am reprieved a further 4 months until 29 June when we go through the process again.
If I can get through the next checkup and a further one later in the year then I will have achieved 3 years of watch and wait without treatment. Considering my fears of watch and wait at point of diagnosis and thinking my life was about to come crashing to it's sombre end, Lymphoma has not overcome me; there can be life beyond a cancer diagnosis. OK so my cancer remains incurable; it's always going to be there and it is going to worsen and I will need treatment, but life is about the here and now; so relish in the moment. We cannot change the past, we cannot predict the future but we can make the most of our here and now.
On the Colonoscopy front, despite the January procedure coming to an abrupt end due to equipment breakdown, my second Colonoscopy went without a hitch 2 weeks ago (Piccolax and Klean-Prep both remain on my hit list! - dreadful medicine) and I got the all clear today. An outpatients appointment on 24 April should ascertain the next way forward for the ongoing abdominal pain, but I'm relieved to find there's nothing serious that can be attributing to the cause.
Write again soon.
x
Tuesday, 24 January 2012
Northern Lights?
I understand that the Northern Lights might be seen as far away as South London this evening. I'm in Hampshire so not sure if I will be fortunate enough to see anything but I will be looking out anyway in eager anticipation. This has been a wonder I have always wanted to see so if tonight does not yield anything I think I may have to consider formulating a "bucket list".
Biopsy = Normal
Well the surgical procedure I had has been and gone, it wasn't pleasant but then I expected that. The biopsy has been returned as normal but my Consultant wants to still see me again on 3 February so I will need to discuss the ongoing pain I am in and how we move forward.
Tuesday, 3 January 2012
Welcome 2012
I have been meaning to update my blog for some time now and when I actually logged in just a few minutes ago to add a new post, I was taken aback by how long it's been since I was here!
There have been so many events that have taken place during 2011; too many to list quite frankly and most of which have not been positive or not things I wish to dwell on.
On a positive note, "Lenny" remains stable, and I have managed to stave off any treatment requirements for another 12 months; so it's now 2 years since my diagnosis and I continue on watch and wait. The enlarged lymph node that was at the original site in my groin (that confirmed my condition) has nonetheless returned; as have a further 2 in the same groin, but I remain asymptomatic so there's no additional action needed for now. I have no idea what Lenny may doing throughout the rest of my body as I haven't had any further scans. I never imagined getting to this point, so on reflection, perhaps I have been more courageous and have had more strength than I have given myself credit for.
I'm still getting professional support for the emotional impact cancer has had on my life from some outstanding Therapists and Medics and there have been some very dark and testing times. I remain on medical sick leave for both the emotional and physical aspects.
More recently I have been experiencing additional medical problems; which could be linked to my Lymphoma. To the credit of the NHS, in the last week I have been referred to Specialists, met with my Consultant, had tests and this week (Friday) will be admitted as a day patient to have a surgical procedure which will help diagnosis the problem. Lymphoma has been mentioned more than once and I know that the Consultants believe there could be a link so I'm grateful in some ways to be propelled through the NHS system, although I do not relish what's ahead in the coming days; and if I'm completely honest I'm very scared.
My New Year's resolutions are now set - and it's all about me....finally.
My next routine Lymphoma checkup is mid- February, so if I don't report back before then re; the above, I promise an update next month.
Happy New Year - best wishes for 2012.
There have been so many events that have taken place during 2011; too many to list quite frankly and most of which have not been positive or not things I wish to dwell on.
On a positive note, "Lenny" remains stable, and I have managed to stave off any treatment requirements for another 12 months; so it's now 2 years since my diagnosis and I continue on watch and wait. The enlarged lymph node that was at the original site in my groin (that confirmed my condition) has nonetheless returned; as have a further 2 in the same groin, but I remain asymptomatic so there's no additional action needed for now. I have no idea what Lenny may doing throughout the rest of my body as I haven't had any further scans. I never imagined getting to this point, so on reflection, perhaps I have been more courageous and have had more strength than I have given myself credit for.
I'm still getting professional support for the emotional impact cancer has had on my life from some outstanding Therapists and Medics and there have been some very dark and testing times. I remain on medical sick leave for both the emotional and physical aspects.
More recently I have been experiencing additional medical problems; which could be linked to my Lymphoma. To the credit of the NHS, in the last week I have been referred to Specialists, met with my Consultant, had tests and this week (Friday) will be admitted as a day patient to have a surgical procedure which will help diagnosis the problem. Lymphoma has been mentioned more than once and I know that the Consultants believe there could be a link so I'm grateful in some ways to be propelled through the NHS system, although I do not relish what's ahead in the coming days; and if I'm completely honest I'm very scared.
My New Year's resolutions are now set - and it's all about me....finally.
My next routine Lymphoma checkup is mid- February, so if I don't report back before then re; the above, I promise an update next month.
Happy New Year - best wishes for 2012.
Sunday, 20 February 2011
Happy Anniversary
The anniversary of my Lymphoma diagnosis has been and gone.
In some respects it dampened our festive celebrations as I elected to spend our time quietly for fear of my emotional wellbeing; I wasn't quite sure how I was going to respond to the anniversary but Christmas did go well, my Son thoroughly enjoyed it and the opportunity to reflect the events of the past year was probably not such a bad thing. Sure there were tears, mainly on New Years Eve as we let go of the previous 12 months and welcomed in the coming year, with a chinese lantern release and champagne with my family in the North West. It was at that moment that I really realised how painful the year had been and the acceptance that future years would now always be uncertain.
A further CT scan has actually shown marginal reduction in the size of lymph nodes which was welcoming news but my spleen is enlarged, ever demonstrating the reality of the waxing and waning approach of this disease. But I continue on the "watch and wait" approach for the time being with a further review in April 2011.
The psychological effects continue to be a burden but counselling is ongoing as I continue through this process of accepting what life has thrown my way.
I have begun planning the future a little but try not to reflect on that too much but being the ever organised person that I am, taking this action does provide some degree of comfort knowing that things are 'in order' for the appropriate moment. The complexity and challenges of my Will still overcome me but I have begun to put together my thoughts and wishes for my departure, such as music, verses, flowers and so on and I have also started a memory box and documenting my Mummy Manual for my beautiful son and husband so my parenting needs and methods can continue and the memories are captured to help them remember. It's an incredibly hard thing to do but for those that have undergone this before I do believe it's also a truly courageous act; until you are faced with such a dilemma I don't think you could ever understand. It's saddening to undertake but a neccesity for me. My plan is to review the material annually and hopefully look back in 10 years having never needed to implement it.
I still continue to be plagued with physical symptoms; the continual fight against infection and extreme fatigue do not appear to be showing any signs of slowdown but I have come to expect this now and just live each day as best as I can. The return of the tumour to my groin never lets me forget the journey I am on but whilst I share my body with this disease, I also continue to fight it and I will win this battle.
My 40th year is just around the corner and I'm considering leaping out of a plane for charity in April to celebrate the occasion but I think that needs a little more thought (and work on my fear of heights!).
I wish you all well for the year ahead and I'll be back to blog again soon.
In some respects it dampened our festive celebrations as I elected to spend our time quietly for fear of my emotional wellbeing; I wasn't quite sure how I was going to respond to the anniversary but Christmas did go well, my Son thoroughly enjoyed it and the opportunity to reflect the events of the past year was probably not such a bad thing. Sure there were tears, mainly on New Years Eve as we let go of the previous 12 months and welcomed in the coming year, with a chinese lantern release and champagne with my family in the North West. It was at that moment that I really realised how painful the year had been and the acceptance that future years would now always be uncertain.
A further CT scan has actually shown marginal reduction in the size of lymph nodes which was welcoming news but my spleen is enlarged, ever demonstrating the reality of the waxing and waning approach of this disease. But I continue on the "watch and wait" approach for the time being with a further review in April 2011.
The psychological effects continue to be a burden but counselling is ongoing as I continue through this process of accepting what life has thrown my way.
I have begun planning the future a little but try not to reflect on that too much but being the ever organised person that I am, taking this action does provide some degree of comfort knowing that things are 'in order' for the appropriate moment. The complexity and challenges of my Will still overcome me but I have begun to put together my thoughts and wishes for my departure, such as music, verses, flowers and so on and I have also started a memory box and documenting my Mummy Manual for my beautiful son and husband so my parenting needs and methods can continue and the memories are captured to help them remember. It's an incredibly hard thing to do but for those that have undergone this before I do believe it's also a truly courageous act; until you are faced with such a dilemma I don't think you could ever understand. It's saddening to undertake but a neccesity for me. My plan is to review the material annually and hopefully look back in 10 years having never needed to implement it.
I still continue to be plagued with physical symptoms; the continual fight against infection and extreme fatigue do not appear to be showing any signs of slowdown but I have come to expect this now and just live each day as best as I can. The return of the tumour to my groin never lets me forget the journey I am on but whilst I share my body with this disease, I also continue to fight it and I will win this battle.
My 40th year is just around the corner and I'm considering leaping out of a plane for charity in April to celebrate the occasion but I think that needs a little more thought (and work on my fear of heights!).
I wish you all well for the year ahead and I'll be back to blog again soon.
Tuesday, 10 August 2010
Where Has the Time Flown?
It's been some time again, for which I apologise, but life has really taken some dramatic and devastating twists and turns. Too many to mention here and too painful to discuss, but needless to say my contingency planning came into force mid June and life has been cruel ever since. It really does make you wonder how much one person can really take.
On my Lymphoma journey more checkups have been and gone and my latest didn't go quite as well as hoped with signs of the onset of tissue damage now to my organs. My medical team have become part of my extended family and whom I trust with my life, quite literally.
Some of the more dramatic events show glimmers of resolution in the not too distant future and once those settle I have some significant changes of my own planned and cannot wait for that moment to come when I can put them into practice. Oh how I intend to relish that day.
On my Lymphoma journey more checkups have been and gone and my latest didn't go quite as well as hoped with signs of the onset of tissue damage now to my organs. My medical team have become part of my extended family and whom I trust with my life, quite literally.
Some of the more dramatic events show glimmers of resolution in the not too distant future and once those settle I have some significant changes of my own planned and cannot wait for that moment to come when I can put them into practice. Oh how I intend to relish that day.
Monday, 7 June 2010
It's Been a While
....since I wrote my last blog, that's not due to any adverse situation with the Lymphoma, although I have continued to be plagued with viruses and infections continuously since my last checkup 2 months ago, it's moreso what else is going on with my family life at present
It's not for me to go into here, those closest to me know to what I am referring, but what is happening right now has provided me a further wake up call and Lymphoma really isn't the end of the world. By the middle of June my life may well and truly be turned upside down or may finally be closure to what has been one of the worst twelve months of my life.
My family has been so tested this past year, with some truly horrific and traumatic situations to deal with, and whilst I cannot speak for all of them, personally I'm absolutely exhausted. Life's become a battle. I thought it would be the Lymphoma that would cause that and I'm sure there's an impact somewhere, but trauma and seriously high stress have further put life into perspective and drained me of what I had left.
I have had to make some tough decisions and contingency planning that may or may not come into force at the end of this month. I have had to re-evaluate my personal circumstances and things will be changing in the short term.
On a more positive note I had a further checkup last week. All was fine. Lenny continues to lie in waiting, with no sign of tumour growth or further spread. I will return in a further 2 months for my next checkup and thorough blood tests at my next visit. So enjoy the summer Lenny, and don't drop by too soon.
It's not for me to go into here, those closest to me know to what I am referring, but what is happening right now has provided me a further wake up call and Lymphoma really isn't the end of the world. By the middle of June my life may well and truly be turned upside down or may finally be closure to what has been one of the worst twelve months of my life.
My family has been so tested this past year, with some truly horrific and traumatic situations to deal with, and whilst I cannot speak for all of them, personally I'm absolutely exhausted. Life's become a battle. I thought it would be the Lymphoma that would cause that and I'm sure there's an impact somewhere, but trauma and seriously high stress have further put life into perspective and drained me of what I had left.
I have had to make some tough decisions and contingency planning that may or may not come into force at the end of this month. I have had to re-evaluate my personal circumstances and things will be changing in the short term.
On a more positive note I had a further checkup last week. All was fine. Lenny continues to lie in waiting, with no sign of tumour growth or further spread. I will return in a further 2 months for my next checkup and thorough blood tests at my next visit. So enjoy the summer Lenny, and don't drop by too soon.
Tuesday, 11 May 2010
Plodding Along....
That's exactly how I feel, life is just bumbling along.
It will be 5 months since I was diagnosed this Friday. I cannot quite believe where the time has gone, but in many respects it also feels like years rather than months.
I'm having yet another period of infection after infection, with the latest throat infection and virus ongoing for almost 2 weeks now but this time with temperatures at fever pitch. But today it feels like it has eased slightly and that I might be on the road to recovery, and at least I have something similar to a voice again today.
Life presents another major hurdle next week. Not something I am going to outline in this blog but for the few that I have spoken to about it they know what I am referring to. I'm sure life generally will feel much easier to deal with once that has been put out to closure.
My reflexology continues to go better than expected, to the point I rather enjoy the appointments now and the Hospice is a very calm and peaceful place with lovely staff. "M" was pleased with the receipt of 6 fresh eggs this week and may perhaps persuade her to obtain some hens of her own for her allotment.
"M" did restate (as she has done a number of times now) that I clearly struggle to relax and I now have another relaxation technique to try with some additional natural therapy suggestions to help boost my immune system.
Lenny Lymphoma continues to make its presence felt with the uncomfortable lump in my neck ever present and a suspect lump having now appeared under my armpit which I continue to monitor closely. My Medical Team have offered to bring my next appointment forward if it doesn't subside, but for now I'm just keeping an eye on things as a few weeks will make absolutely no difference.
So I will just continue to plod along, as I don't have much energy for anything else. Roll on 2 weeks from now when I hope to have eliminated yet another of life's challenges to allow for a smoother path ahead.
It will be 5 months since I was diagnosed this Friday. I cannot quite believe where the time has gone, but in many respects it also feels like years rather than months.
I'm having yet another period of infection after infection, with the latest throat infection and virus ongoing for almost 2 weeks now but this time with temperatures at fever pitch. But today it feels like it has eased slightly and that I might be on the road to recovery, and at least I have something similar to a voice again today.
Life presents another major hurdle next week. Not something I am going to outline in this blog but for the few that I have spoken to about it they know what I am referring to. I'm sure life generally will feel much easier to deal with once that has been put out to closure.
My reflexology continues to go better than expected, to the point I rather enjoy the appointments now and the Hospice is a very calm and peaceful place with lovely staff. "M" was pleased with the receipt of 6 fresh eggs this week and may perhaps persuade her to obtain some hens of her own for her allotment.
"M" did restate (as she has done a number of times now) that I clearly struggle to relax and I now have another relaxation technique to try with some additional natural therapy suggestions to help boost my immune system.
Lenny Lymphoma continues to make its presence felt with the uncomfortable lump in my neck ever present and a suspect lump having now appeared under my armpit which I continue to monitor closely. My Medical Team have offered to bring my next appointment forward if it doesn't subside, but for now I'm just keeping an eye on things as a few weeks will make absolutely no difference.
So I will just continue to plod along, as I don't have much energy for anything else. Roll on 2 weeks from now when I hope to have eliminated yet another of life's challenges to allow for a smoother path ahead.
Friday, 23 April 2010
Bumps Galore down the Supermarket Aisles
There are many aspects of life that change when cancer is diagnosed, and I believe I am familiar with most of them now.
People's reactions can cause surprise, alarm and others provide immense support and reassurance. Some turn away, lacking the ability to find the right words to string together a worthy conversation they feel confident enough to hold, whilst all I needed was a hug. GP's look at you with sadness (and in my case with a sense of guilt) as if it's all too late. Specialist Medical Teams thrive on optimism and hang on every glimmer of hope. Employers handle with caution and ensure they are following process and protocol to the letter.
The Government deems me now worthy of the badge “disabled”, although I do not believe what I have at this moment in time presents any disability and presents only a feeling of fraudulency. But on the other hand, such a “tag” provides protection and comfort that I will be taken care of both in terms of benefits and discrimination, as appropriate.
Cancer has snatched away many options, but I still have many to choose from. My life remains almost normal, with the occasional appearance from Lenny Lymphoma both physically and mentally but otherwise he allows me to continue as before.
I still have choices, I am still able to make my own decisions, I still have my own free will.
The hardest decision to date has been that of additional children. It needn't be a secret anymore that back in September 2009, after the 'all clear' from my GP on the lump in my groin during my first visit, my husband and I had decided it was the right time to try for a second child. A son or daughter for us, a brother or sister and a playmate for Callum.
Our views on additional children have become slightly uneven since that time. No Medical Team will advise that to try for further children after such a diagnosis is the right or wrong thing to do, but they air on the side of caution, present examples of similar situations and outcomes, but continue to provision all the support required if that path should be chosen.
I always had a personal goal of 40 for a second child. If that age was reached and/or past without a second child then for me, it was as nature intended, but as of December my deadline was prematurely ended; for my husband it is a temporary plot on the pregnancy landscape that should be revisited in 12 months time (6 months before my 40th birthday). My Medical Team support our decision either way, but in my heart of hearts my decision has already been made.
My Father fell to cancer when I was a little over 2 years old and I have experienced a single parent family first hand. My Mum did the most amazing job and became both parents to me, but if I had a choice, I would choose to have both parents every time.
I hope to have many many years of trouble-free illness, but there is an absolute risk I cannot ignore and that's to make a conscious decision to present that possibility to a 4 year old boy and any future children and that is not a choice I am willing to make.
Most days I am able to put this decision to one side. I know of friends and colleagues that are “with child” and I am amongst the happiest for them, but there are other days when I wish not to be reminded of the difficult decisions we have had to make. I counted 12 pregnant ladies in the local Supermarket this evening, it was truly bumps galore on special offer!
They all looked beautiful and radiant and I wish them all the very best. I only hope that one day my feelings of anguish over my own decision will subside and allow me to be at peace.
People's reactions can cause surprise, alarm and others provide immense support and reassurance. Some turn away, lacking the ability to find the right words to string together a worthy conversation they feel confident enough to hold, whilst all I needed was a hug. GP's look at you with sadness (and in my case with a sense of guilt) as if it's all too late. Specialist Medical Teams thrive on optimism and hang on every glimmer of hope. Employers handle with caution and ensure they are following process and protocol to the letter.
The Government deems me now worthy of the badge “disabled”, although I do not believe what I have at this moment in time presents any disability and presents only a feeling of fraudulency. But on the other hand, such a “tag” provides protection and comfort that I will be taken care of both in terms of benefits and discrimination, as appropriate.
Cancer has snatched away many options, but I still have many to choose from. My life remains almost normal, with the occasional appearance from Lenny Lymphoma both physically and mentally but otherwise he allows me to continue as before.
I still have choices, I am still able to make my own decisions, I still have my own free will.
The hardest decision to date has been that of additional children. It needn't be a secret anymore that back in September 2009, after the 'all clear' from my GP on the lump in my groin during my first visit, my husband and I had decided it was the right time to try for a second child. A son or daughter for us, a brother or sister and a playmate for Callum.
Our views on additional children have become slightly uneven since that time. No Medical Team will advise that to try for further children after such a diagnosis is the right or wrong thing to do, but they air on the side of caution, present examples of similar situations and outcomes, but continue to provision all the support required if that path should be chosen.
I always had a personal goal of 40 for a second child. If that age was reached and/or past without a second child then for me, it was as nature intended, but as of December my deadline was prematurely ended; for my husband it is a temporary plot on the pregnancy landscape that should be revisited in 12 months time (6 months before my 40th birthday). My Medical Team support our decision either way, but in my heart of hearts my decision has already been made.
My Father fell to cancer when I was a little over 2 years old and I have experienced a single parent family first hand. My Mum did the most amazing job and became both parents to me, but if I had a choice, I would choose to have both parents every time.
I hope to have many many years of trouble-free illness, but there is an absolute risk I cannot ignore and that's to make a conscious decision to present that possibility to a 4 year old boy and any future children and that is not a choice I am willing to make.
Most days I am able to put this decision to one side. I know of friends and colleagues that are “with child” and I am amongst the happiest for them, but there are other days when I wish not to be reminded of the difficult decisions we have had to make. I counted 12 pregnant ladies in the local Supermarket this evening, it was truly bumps galore on special offer!
They all looked beautiful and radiant and I wish them all the very best. I only hope that one day my feelings of anguish over my own decision will subside and allow me to be at peace.
Monday, 19 April 2010
Break Away
Had a nice week in Devon, not far from Dartmouth, and now back to the reality of e-mail, conference calls and the likes.
The weather treated us kindly so we where able to get out and explore most days, but unfortunately you have to return the humdrum at some point.
The weekend has been spent with run-of-the-mill housework catching up and yesterday a lovely day in the garden. The chickens now have their own luxury lawned extension so are very content little hens and we have commenced the reclaim of our own piece of garden, and I'm hoping the weather will hold its own today to enable us to use the new BBQ this evening.
My Race for Life training commences in real earnest this week. It's a little late due to health issues but the training plan is in place and I'm ready for the starting blocks.
I'm still incredibly tired and lack real energy but am optimistic that the additional exercise may produce some reserves.
The weather treated us kindly so we where able to get out and explore most days, but unfortunately you have to return the humdrum at some point.
The weekend has been spent with run-of-the-mill housework catching up and yesterday a lovely day in the garden. The chickens now have their own luxury lawned extension so are very content little hens and we have commenced the reclaim of our own piece of garden, and I'm hoping the weather will hold its own today to enable us to use the new BBQ this evening.
My Race for Life training commences in real earnest this week. It's a little late due to health issues but the training plan is in place and I'm ready for the starting blocks.
I'm still incredibly tired and lack real energy but am optimistic that the additional exercise may produce some reserves.
Wednesday, 7 April 2010
The Results Are In
Check up again today and all was fine. Blood results where good and no signs of further growth or spread in the last 6 weeks. I was so relieved as I had a bad feeling about today, but I was proved wrong for which I thank my blessings and all those that have been sending positive thoughts and prayers.
I have been reprieved for 2 months, so watch out 9 June, here I come to kick your butt once more.
I have been reprieved for 2 months, so watch out 9 June, here I come to kick your butt once more.
Monday, 5 April 2010
A Mixed Week
It's been a mixed week.
I caught some kind of bug the day after my complimentary therapy, which at the time I thought may have been some form of reaction, but I soon realised it was a plain and simple virus. Fortunately it only lasted a couple of days and before I knew it I was back on my feet with renewed vigour.
Since then we have had the long Easter weekend which has been spent extending the chicken's palatial empire which was completed today, courtesy of my DIY clever husband, inclusive of their very own lawn, in an attempt to retake ownership of a lawn and garden fit for human habitation. It remains 'work in progress' but we have made a great start and the garden has become livable and tidy once more and the lawn will be re-seeded this week. However as I sit here and type I truly am “stiff as a board”.
Our son had a lovely Saturday afternoon with his best pal and we had lunch with the In-Laws today, followed by a short walk in the sun. I do like how a little sunshine warmth accompanied by the lighter evenings can really uplift your spirits.
The week was then topped off by the receipt of my new engagement and eternity rings. My diamonds have been reset and redesigned into 2 new beautiful rings and my hand feels complete once again. A new wedding band has now been commissioned to complete the set. I'm a lucky girl!
My 4-year old Son is now officially richer than me, as family elected to give cash rather than chocolate as Easter gifts. His numerous nursery girl-friends provided the chocolate fix he requires, despite his obvious disappointment that people forget he doesn't do “brown” chocolate – only white is acceptable, of which he didn't get many of his preferred option, but enough to keep him in white chocolate for a few days. Whilst on the other hand, my husband is very content with his role to remove all trace of the "brown" chocolate as quickly as possible. I must admit to having my own eye on the mini-eggs.
This week I face another 6-weekly check-up and was back at Pathology last Thursday for my routine bloods.
Life truly runs a 6-week cycle; I cannot look beyond that, and by week 5, my apprehension makes its devilish reappearance.
For a few weeks my fatigue seemed to ease, but the last 2 weeks it has returned and not a day passes without the 3pm “slump” and the 3am "wake". I feel old beyond my years as I feel drained of the energy expected of a 38 year old.
At my last appointment my potassium levels where low so I'm hopeful that has been remedied by diet, and was quite amused by how my husband and In-Laws tried to, and successfully, persuaded me to allow 2 brussel sprouts to pass my lips today on the basis that they are potassium and iron rich.
I am however something of a little nervous that all may not be as well with my platelet count. It is not just the tiredness again, but my ability to bruise with such ease having returned with avengeance; as can be demonstrated by the 8cm bruise down my left shin courtesy of a mishap with the ensuite toilet, and the mysterious markings that seem to have applied themselves elsewhere. My rash continues to present itself with the upmost pride. In addition my “bleeder” reputation during blood tests failed to disappoint again on Thursday and by the time I was back home my “x marks the blood test spot” dressing was hanging on for dear life as my arm was heavily blood stained. I have never seen anything quite like it and it made me feel a little nauseous.
So here's to Wednesday. May you treat me gently and offer positive news that will allow me a further 6 weeks of perspective normality.
I caught some kind of bug the day after my complimentary therapy, which at the time I thought may have been some form of reaction, but I soon realised it was a plain and simple virus. Fortunately it only lasted a couple of days and before I knew it I was back on my feet with renewed vigour.
Since then we have had the long Easter weekend which has been spent extending the chicken's palatial empire which was completed today, courtesy of my DIY clever husband, inclusive of their very own lawn, in an attempt to retake ownership of a lawn and garden fit for human habitation. It remains 'work in progress' but we have made a great start and the garden has become livable and tidy once more and the lawn will be re-seeded this week. However as I sit here and type I truly am “stiff as a board”.
Our son had a lovely Saturday afternoon with his best pal and we had lunch with the In-Laws today, followed by a short walk in the sun. I do like how a little sunshine warmth accompanied by the lighter evenings can really uplift your spirits.
The week was then topped off by the receipt of my new engagement and eternity rings. My diamonds have been reset and redesigned into 2 new beautiful rings and my hand feels complete once again. A new wedding band has now been commissioned to complete the set. I'm a lucky girl!
My 4-year old Son is now officially richer than me, as family elected to give cash rather than chocolate as Easter gifts. His numerous nursery girl-friends provided the chocolate fix he requires, despite his obvious disappointment that people forget he doesn't do “brown” chocolate – only white is acceptable, of which he didn't get many of his preferred option, but enough to keep him in white chocolate for a few days. Whilst on the other hand, my husband is very content with his role to remove all trace of the "brown" chocolate as quickly as possible. I must admit to having my own eye on the mini-eggs.
This week I face another 6-weekly check-up and was back at Pathology last Thursday for my routine bloods.
Life truly runs a 6-week cycle; I cannot look beyond that, and by week 5, my apprehension makes its devilish reappearance.
For a few weeks my fatigue seemed to ease, but the last 2 weeks it has returned and not a day passes without the 3pm “slump” and the 3am "wake". I feel old beyond my years as I feel drained of the energy expected of a 38 year old.
At my last appointment my potassium levels where low so I'm hopeful that has been remedied by diet, and was quite amused by how my husband and In-Laws tried to, and successfully, persuaded me to allow 2 brussel sprouts to pass my lips today on the basis that they are potassium and iron rich.
I am however something of a little nervous that all may not be as well with my platelet count. It is not just the tiredness again, but my ability to bruise with such ease having returned with avengeance; as can be demonstrated by the 8cm bruise down my left shin courtesy of a mishap with the ensuite toilet, and the mysterious markings that seem to have applied themselves elsewhere. My rash continues to present itself with the upmost pride. In addition my “bleeder” reputation during blood tests failed to disappoint again on Thursday and by the time I was back home my “x marks the blood test spot” dressing was hanging on for dear life as my arm was heavily blood stained. I have never seen anything quite like it and it made me feel a little nauseous.
So here's to Wednesday. May you treat me gently and offer positive news that will allow me a further 6 weeks of perspective normality.
Monday, 29 March 2010
I Can't Stand Feet!
Well today I had the day off and had my first appointment for complimentary therapy at the Hospice.
I was very dubious about going to the Hospice as I had expected to see lots of very poorly people, and the use of the word Hospice sounds so final, but the Turner Centre was a separate building to the rest of the premises, so I was almost segmented and guarded from seeing the reality of what the Hospice stands for.
I did meet a very nice lady who was clearly very unwell and it does remind you of the seriousness of the situation; she had a great sense of humour particularly when a member of staff forgot to put sugar in her tea, as her volunteer driver sat quietly by her side.
I was very impressed with St Michaels, the staff were lovely and the surroundings were very nice and calming.
Off I went to the treatment room for reflexology. I have a natural affliction for feet but I gave it a go, with every muscle tensed I lay down ready to laugh out loud as I am so ticklish but actually it wasn't like that at all. Infact it was very nice indeed.
I now have an aromatherapy sniff stick (!) to help me relax whenever I need it and after the treatment was completed I was escorted back to reception for a nice cup of tea and as long as I needed to drift back to reality before making my next appointment. And that I did as I watched the rain bounce on the ground outside.
St Michaels Hospice do an absolutely fantastic job, of that I have no doubt. Just one visit made me realise just how important the pallative care offerings they provide really are and with only 30% of their funds provided by the Primary Care Trust and the remaining £1.8 million required to continue to run the Hospice per year being raised by charitable donations their achievements are substantial and it's a Charity I would be honoured to support.
I was very dubious about going to the Hospice as I had expected to see lots of very poorly people, and the use of the word Hospice sounds so final, but the Turner Centre was a separate building to the rest of the premises, so I was almost segmented and guarded from seeing the reality of what the Hospice stands for.
I did meet a very nice lady who was clearly very unwell and it does remind you of the seriousness of the situation; she had a great sense of humour particularly when a member of staff forgot to put sugar in her tea, as her volunteer driver sat quietly by her side.
I was very impressed with St Michaels, the staff were lovely and the surroundings were very nice and calming.
Off I went to the treatment room for reflexology. I have a natural affliction for feet but I gave it a go, with every muscle tensed I lay down ready to laugh out loud as I am so ticklish but actually it wasn't like that at all. Infact it was very nice indeed.
I now have an aromatherapy sniff stick (!) to help me relax whenever I need it and after the treatment was completed I was escorted back to reception for a nice cup of tea and as long as I needed to drift back to reality before making my next appointment. And that I did as I watched the rain bounce on the ground outside.
St Michaels Hospice do an absolutely fantastic job, of that I have no doubt. Just one visit made me realise just how important the pallative care offerings they provide really are and with only 30% of their funds provided by the Primary Care Trust and the remaining £1.8 million required to continue to run the Hospice per year being raised by charitable donations their achievements are substantial and it's a Charity I would be honoured to support.
Wednesday, 24 March 2010
Similarities of "Biscuit" the Goldfish
When faced with a life threatening condition a number of things change. For me, life has been reprioritised, and as an existing “heart on the sleeve” wearer, I have become even more emotional as has been demonstrated this week as I watched the Boyzone programme about Stephen Gately and Eddie Izzard's incredible marathon of marathons as I sat there quietly with only an occasional sniffle to break the silence. I watched Children's Hospital last night and was in complete awe of those children's fight and courage. If there was ever a demonstration of hope and determination it comes from those beautiful children.
My view of death has also changed. It's something I have always been incredibly scared of, and that hasn't changed. I have had my fair share of dreams of being locked in a coffin alive and hovering above myself lying on a bed as my family are all sat around me saying their final goodbyes. I know I'm not alone on that. As we speak, death is around me, not for myself or a friend or family member but for, (now don't laugh, go with me on this one and all should become clearer); our pet goldfish.
We lost 1 of 4 goldfish last week. It happened very quickly and there wasn't much we could do. As I explained to my 4-year old Son that Jammie had gone to heaven (via the toilet), Callum remains convinced that we will be reunited with Jammie in “Devon” on our holiday in a few weeks time. It's hard to explain the concept of heaven to a 4-year old, especially when he refers to it as a holiday destination!
On Monday, our second goldfish, Biscuit, and one of our oldest at 3.5 years old started to act unwell.
Biscuit, looked and seemed well until then. You would never have known Biscuit was suffering a life threatening condition nor do I know for how long. No obvious markings, and until yesterday, no strange movements. To the onlooker all seemed to be well. All of a sudden Biscuit lost his / her balance, his / her control had gone and Biscuit looked on with a glazed expression, breathless.
I found Biscuit's inability to control his / her balance and his / her abnormal rolling unnaturally distressing yesterday morning and found myself to be first in the queue at opening time at Pets at Home to hear a diagnosis of swim bladder in complete panic. I took the treatment home, but sadly it was too late for Biscuit.
As I lifted Biscuit out of the tank he / she took a breath, was this a breath and a small sign of life or a bodily / chemical reaction when lifted from the water? I do know the answer, but Biscuit remained in his / her tank until I found the courage to accept it was time to take a trip to “Devon”.
Biscuits condition may be similar to mine. You just would never have guessed, until one day it showed itself.
May Biscuit and Jammie RIP in “Devon”.
My view of death has also changed. It's something I have always been incredibly scared of, and that hasn't changed. I have had my fair share of dreams of being locked in a coffin alive and hovering above myself lying on a bed as my family are all sat around me saying their final goodbyes. I know I'm not alone on that. As we speak, death is around me, not for myself or a friend or family member but for, (now don't laugh, go with me on this one and all should become clearer); our pet goldfish.
We lost 1 of 4 goldfish last week. It happened very quickly and there wasn't much we could do. As I explained to my 4-year old Son that Jammie had gone to heaven (via the toilet), Callum remains convinced that we will be reunited with Jammie in “Devon” on our holiday in a few weeks time. It's hard to explain the concept of heaven to a 4-year old, especially when he refers to it as a holiday destination!
On Monday, our second goldfish, Biscuit, and one of our oldest at 3.5 years old started to act unwell.
Biscuit, looked and seemed well until then. You would never have known Biscuit was suffering a life threatening condition nor do I know for how long. No obvious markings, and until yesterday, no strange movements. To the onlooker all seemed to be well. All of a sudden Biscuit lost his / her balance, his / her control had gone and Biscuit looked on with a glazed expression, breathless.
I found Biscuit's inability to control his / her balance and his / her abnormal rolling unnaturally distressing yesterday morning and found myself to be first in the queue at opening time at Pets at Home to hear a diagnosis of swim bladder in complete panic. I took the treatment home, but sadly it was too late for Biscuit.
As I lifted Biscuit out of the tank he / she took a breath, was this a breath and a small sign of life or a bodily / chemical reaction when lifted from the water? I do know the answer, but Biscuit remained in his / her tank until I found the courage to accept it was time to take a trip to “Devon”.
Biscuits condition may be similar to mine. You just would never have guessed, until one day it showed itself.
May Biscuit and Jammie RIP in “Devon”.
Friday, 19 March 2010
Time for Change
There comes a time when life has to return to some kind of normality or you are just going to go out of your mind and Lenny Lymphoma will drive you insane - and for me that transition to normality feels like it maybe starting.
This week feels like a turning point. I feel more positive and can see beyond next week. The good days are outweighing the bad.
Registering to participate in Cancer Research UK's Race for Life in June 2010 was the first stepping stone; to give some good back to those vital Organisations who have been helping me; but it was also a diversion, a “feel good” factor.
Counselling from the lovely Ros is starting to help me to understand, to rationalise and to accept the feelings I have.
Continuing to review and absorb information is a powerful tool. If you can understand your condition you find more strength to fight. Knowledge really is power. Some find my constant review of the Web unsettling, but I only take note of information from reputable Organisations; I really do not need horror stories or glimmers of false hope.
I am about to register for a Reiki Healing Course; not only to learn a new skill, but a great opportunity to seek self-relaxation and help those around me; heal the healer as they say.
This evening I have some pampering of my own, with an appointment at my favourite salon for a new hairstyle and colour ready for Spring – thank you R & C; it's a lovely Mothers Day present. As I walked my dogs this lunchtime I also saw the first Daffodils emerging, so Spring really is in the h..air!
I have also become a MacMillan Cancer Voice, using my experience of Cancer to date along with many others to help shape the future of Cancer care and to assist in making life better for everyone affected by Cancer.
I do believe I have started the next stage of my journey; taking back control of this situation.
This week feels like a turning point. I feel more positive and can see beyond next week. The good days are outweighing the bad.
Registering to participate in Cancer Research UK's Race for Life in June 2010 was the first stepping stone; to give some good back to those vital Organisations who have been helping me; but it was also a diversion, a “feel good” factor.
Counselling from the lovely Ros is starting to help me to understand, to rationalise and to accept the feelings I have.
Continuing to review and absorb information is a powerful tool. If you can understand your condition you find more strength to fight. Knowledge really is power. Some find my constant review of the Web unsettling, but I only take note of information from reputable Organisations; I really do not need horror stories or glimmers of false hope.
I am about to register for a Reiki Healing Course; not only to learn a new skill, but a great opportunity to seek self-relaxation and help those around me; heal the healer as they say.
This evening I have some pampering of my own, with an appointment at my favourite salon for a new hairstyle and colour ready for Spring – thank you R & C; it's a lovely Mothers Day present. As I walked my dogs this lunchtime I also saw the first Daffodils emerging, so Spring really is in the h..air!
I have also become a MacMillan Cancer Voice, using my experience of Cancer to date along with many others to help shape the future of Cancer care and to assist in making life better for everyone affected by Cancer.
I do believe I have started the next stage of my journey; taking back control of this situation.
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