I had thought about changing the title of this blog since I have decided to hijack it to share my latest excitements. But then I thought, this is a journey, not in the traditional sense, but one that will chart my travelling from illness to health, from fear to confidence, and from anxiety to a state of mental well-being.
This inspiration came thanks to Mark G, who alerted me to a BBC World Service programme on the Rhetoric of Cancer, presented by a prostate survivor (like Ross) Andrew Graystone. In it he questions the use of all this aggressive and belligerent military terminology: after all, our tumours are a part of us – better to embrace them, stop being a victim and learn how to live with it.
So this blog is going to be more about how I come to terms with my cancer, as I did with Louise’s death, the ups and downs, uncertainties and anxieties but, above all, how I will live with it until the journey ends with my physical and mental wholeness.
One of the great lessons I learned from Louise’s death is the benefit of sharing grief and troubles. My immediate Facebook entry the day she died produced such a fountain of love and support that it really helped pull us through the most terrible time of our lives.That’s why as soon as I heard the ominous word ‘tumour’ I decided, stranded as I am in Singapore, to share again and with as much honesty as I can bear. It has paid dividends…so many wonderful warm and loving messages (less of the beating and fighting now please!), and offers of help of all kinds. I feel embraced and enfolded in an aura of love and unconditional support. Thank you dear friends.
The other main reason for this blog is to keep all you lovely people updated so I don’t have to endlessly repeat myself.
So here goes:
I have had my dark night of the soul – described in the last blog – where I allocated my prized possessions to my dearest friends; where I made a bucket list of ‘Things to do and see before I die’. But now I find I have taken back my belongings and converted that list into another trip to Mana Pools next August, a diving holiday on a fabulous boat in Raja Ampat and a three week trip to Burma. Not bad for someone staring death in the face a few days ago! Reflecting my Carpe Diem mentality, I have always believed in having things to look forward to.
We have now decided that I will be treated at the Marsden. By amazing coincidence Dr Fi was at a conference of early diagnosis cancer specialists on the day she got my text, and a quick survey of the assembled docs pointed to the Marsden, the main reason being the Marsden’s multidisciplinary team approach, so it’s a one-stop shop of excellence. Thanks to another extraordinary coincidence, one of the Marsden surgeons Prof Khong has recommended, Meirion Thomas, is not only a soft tissue sarcoma expert but he also specialises in saving legs…and just happens to be a very good friend of chum Pen. So that’s easy then.
The next dilemma has been whether to go NHS or private: you see the same people whichever route you choose. However, new NHS regs mean that every step of the way is dictated by a referral process, which can take up to 2 weeks…even my GP (who nearly fell off her chair when I rang her, the sarcoma is so rare) agreed that to go private has to be the best option. Someone who does not have insurance can benefit from my place in the queue.
Prof Khong has wanted me to stay here for a couple of weeks to decrease the possibility of a DVT on the flight back, and to give the wound a chance to heal. So our flights are all booked back on 10 December, with my Marsden appointment on 11th. The leg is still painful, wrapped in a huge bandage, which I haven’t dared to take off yet. I think the wound isn’t so bad, it’s just the tumour pressing on the nerves again.
But in one of those heart-in-your-mouth moments that I suspect is only the first of many, this morning I hear that Prof Thomas would like me to come back asap. Of course, this immediately makes me feel very anxious…I had been reassured that the cancer would not spread in two weeks, so I am left wondering what is so urgent. I know that my sarcoma is very rare but we won’t know exactly what sort it is, and therefore how best to treat it, until Wednesday, when the histology comes in. As someone said, ‘Trust you Vix to have the rarest form of cancer. You always do things in style’. And another complimented me on being a ‘rare bird’. Indeed.
So trot back to see Prof Khong, who unbandages me and all looks good, albeit the cut rather longer than I had imagined. He agrees that so long as I take the anti-clotting jabs in my tum (self inflicted!) and wear these lovely stockings – see photo – I can go as soon as the results are in and the slides ready. So now booked to leave on Saturday 30, arriving Sunday 1 December. Are you ready London?
He says that many of these sarcomas don’t respond to radiotherapy and there’s a 50% chance that they may operate immediately. Forewarned is forearmed. I’m ready for anything….
Meanwhile, we have a dear friend, JP, from Barbados staying. We have been out to some delicious meals, albeit me on a stick and not able to walk more than a few yards. And tonight I’m cooking one of my famous Thai Green Curries. But what the hell – a girl’s gotta have fun!
November 25, 2013 at 7:31 am
As usual Vicky, your approach is positive and forthright. A journey indeed but we’ll be with you all the way. xx Janie
November 25, 2013 at 12:04 pm
It is a journey indeed. A journey in which we most learn about ourselves. Gladly accompany you on the way. Bises. Maïté
November 25, 2013 at 1:08 pm
Thanks for the update Vicky… you have said you are now “forearmed….” I believe you should coin a new word: “forelegged!” Keep the news and views coming it relieves OUR anxieties also. Glad you have so much entree into the field you need. All love Bonnie
November 25, 2013 at 2:13 pm
Dear Vicky your honesty is so inspiring and will indeed muster up a huge band of courage and love coming your way especially from South Africa. I look forward to hearing of your journey to health and wholeness. Much love Mandy xx
November 25, 2013 at 4:23 pm
Thanks for sharing all these trials dear Vicky. Your upbeat and extremely brave attitude is inspirational. Love and prayers, Liz
PS As it happens, P’s jabbing his tum too at the moment, post recent UCH surgery (not serious). So he’s especially thinking of you and sends special love.
November 25, 2013 at 5:06 pm
Dear Vicky, witnessing cool courage in the face of the unknown we salute you and we pray that what is unknown will soon be known, and be known to be without serious harm. Gilpatrick
November 26, 2013 at 11:29 am
I wish you every blessing for your journey Vicky. Andrew Graystone
November 27, 2013 at 12:34 am
Once again, dear friends, your love is providing me with a simply enormous comfort blanket which I am wrapping tightly round myself. THese comments are only a tiny fraction of the HUGE numbers of emails and messages on FB that are pouring in. Wonderful!
April 26, 2014 at 6:06 pm
Vicky, we are always thinking & praying for you & family, especially you. Love reading your blogs & notice you have a fighting spirit. You are experiencing cancer while suffering from a severe existential crisis (your daughter which you said has now calm you from all the lovely messages on Lou’S fb) & the passing of your loving dad, mum. And to see you accepting responsibility for resolving the crisis will help you focus on enjoying life. I do not know how much faith you have in God, no doubt you do…..
We are all well. Bill is gradually accepting it as well. He has responded to new developments with neither anxiety nor depression, looking good & feeling best. Our home is negative free zone. He has also changed his own attitude & began to question the self-centeredness that previously had dominated his interpersonal relationships with his family. And being a Vietnam Veteran, he was an odd sibling from the rest of his brothers. Never spoke about his war or the affects of it. Now that he has had more counseling, treatments & involved in recreational activities or reading books, an effective outlet for his repressed emotions. And because of my religious background, I support & encourage him to totally give himself to the will of God. This is not resignation or giving up, but rather commitment leading to new interests in life.
May God keep you, Ross & Tom, safe & enjoy your life to the fullest.
A few biblical verses to think about when you have a spare moment, good for your heart, mentally, spiritually & morally……
The spirit of a man can put up with his malady” says a Bible proverb, “but as for a stricken spirit, who can bear it? Trauma can afflict the spirit of a family as well as “the spirit of a man” Yet, “a calm heart is the life of fleshly organism.” No doubt your family & friends are coping successfully.
I know it is not unusual for family members to have a difficult time facing the facts. Changes and adjustments in the household routine may be difficult at the outset. And am sure your wonderful family are there for you always to adapt to a new situation..
A lovely Psalms from the Bible: (the inspired songbook, they are not only songs of praise but also contain prayers of supplication for mercy and help as well as expressions of trust and confidence. Some are packed with prophecies, many of which have remarkable fulfillment. They contain much instruction that is beneficial and up building all of it clothed in lofty language and imagery that stirs the reader to the very depths..
THIS IS FOR YOU MY DEAR VICKY:
“Your own loving-kindness. O Jehovah, kept sustaining me. When my disquieting thoughts became many inside of me, your own consolations began to fondle my soul”
PSALM 63:6-8 “I remember you while upon my bed; I meditate on you during the watches of the night, For you are my helper, and I shout joyfully in the shadow of your wings”
PSALM 94:18 : When I said: “My foot is slipping, Your loyal love, O Jehovah, kept supporting me. When anxieties overwhelmed me, you comforted and soothed me”
PSAMS 19: 7 : The law of Jehovah is perfect, restoring strength. The reminder of Jehovah is trustworthy, making the inexperienced one wise”
Much love from the land down under! Mary, Bill & family xox
April 27, 2014 at 9:38 am
Mary thank you for your loving words and messages; I am not a believer I’m afraid but I do take great comfort from the belief of others and I do think that because I am a spiritual person (according to my healer) the sum of all these parts will make me whole. I also love the language if the psalms, very uplifting.
I am so glad you too are a negative free zone as I’m sure a lot of the healing is in oneself; the body can heal itself according to Prof Ang. I think of Bill often and hope he will also continue to enjoy life and become a calm and peaceful person along the way.
Sending you all much love.